Dino's Journey

Dino's Journey Continues

2008-09-22T11:44:00.000-07:00

Mary and I have created a memorial fund in Dino's honor at the Community Foundation of Santa Cruz County. We will be reaching out to people who want to do something positive in Dino’s memory. Over the next year, we will be working together and with all of his friends to decide the best use of the contributions that are made to the fund.

Dino was so many things; a writer, a musician, and more than anything else, a fabulous friend. He loved children and he had his favorite causes. Because his life was cut short by a rare and fast-moving cancer, our dream is to create a memorial that captures Dino's spirit and helps others in ways that would have been meaningful to him.

If you would like to make a tax-deductable donation to the Dino's Journey fund, here's what you can do right now:

- A. (check) Make your check payable to: The Community Foundation of Santa Cruz County (with a notation at the bottom that says For Dino's Journey). Send to 2425 Porter Street, Suite 17, Soquel, CA 95073

- B. (credit card) This link will take you to the on-line memorial gift section of the Foundation’s website: http://www.cfscc.org/page18127.cfm. Please put For Dino’s Journey in the Special Instructions box.

The Foundation's phone number is (831) 477-0800.

You can also reach Dick Scoppettone at (831) 588-5614 - send email to dsco7545@att.net or Mary Scoppettone at (831) 345-0304 - send email to mimsy831@yahoo.com.

And . . . Dino’s website, http://www.dinosjourney.com/, is officially up now (put together by Tony Chan). It’s still in basic one-page form because we need to come up with a color scheme, logo, links, and content. If you’ve got any suggestions, please let us know. Should we continue to use the blog to get information out or should we shift over to the website?

With much love//Dick, Mary, Nick & Chris

SPECIAL NOTE: MORE INFO COMING IN THE NEXT SEVERAL DAYS

2008-09-21T16:19:00.000-07:00

Hi Everyone - we're still here. I know we've been out of touch for awhile, but we've been working on the Dino's Journey fund and it looks like it's about ready to go. Should have good details this week. Love to all of you.//Dick

Thank you - each and everyone

2008-08-25T13:50:00.000-07:00

Wasn't yesterday the best? For those of you who couldn't make it to our Day with Dino, we, all of us, soaked up every bit of our favorite son, brother and friend. And to all who were there, your presence carried us through what, for maybe another family, may have been a real tide of grief.

Instead, the opportunity to meet and touch and talk with all of you left us with the best of memories, and I know our boy was truly pleased with an event so rightfully in his honor.

I've been responding to a few e-mails today - obviously I'm taking it easy, but I wanted to mention something that's brewing amongst us family members. It feels like there may be more to Dino's Journey - I really don't know exactly what, but it seems like there's something else hanging out there - some kind of very focused intention. Stay in touch with me, would you, particularly if you've got some ideas.

As always, all our love to you.//Dick, Mary, MiMi, Nick & Amber, Chris & Virginia and Theresa and family

Special Tribute to Dino on KSCO AM1080

2008-08-21T23:31:00.000-07:00

There will be a special two-hour radio tribute to Dino this Saturday, August 23 on KSCO AM1080. The live program airs from 10AM to 12N and they'll be taking your calls.

If you live out of the Santa Cruz area, you can listen to the show on your computer by connecting to the live stream at http://ksco.com/ksco.m3u.

To call in to the program from anywhere, dial (831) 479-1080.

Michael Zwerling, the station owner has known Dino for many years as Dino did a numbers of radio shows from there (like calling in reports from the winter Olympics in Albertville, France).

On the e-mail front, we're approaching 250 and they just keep coming. You know I promised to respond to all of them, but I'm realizing now that it won't be before Sunday - so please forgive. I think the memorial is going to be quite amazing. Hope you can make it. Love to all.//Dick

The Celebration after the Celebration

2008-08-21T08:35:00.000-07:00

As part of getting ready for Dino's memorial on Sunday, I wanted to let you know that we're going to be having a feast after the memorial at Peachwood's which is near the Pasatiempo Golf Course in Santa Cruz - and you know that you're all invited. It will give us a chance to talk to so many of you that have responded to Dino's blog. My e-mails just topped 200 this morning and the stories are absolutely priceless.

We'll have an open mike there, so if you want to ramble at some length about our boy, you'll have the floor. Also, Marjorie Puruganan, one of Dean's co-workers at Sega is putting together a slide show. If you've got any pics you want to submit, e-mail them to Marj at marjorie.puruganan@gmail.com.

Getting to Peachwood's is easy - it's very near the Hwy 1/Hwy 17 interchange (we call it the Fishhook) and there will be maps at Pacific Gardens Chapel to assist everyone in getting there. Since the memorial's at 2PM, we should be heading over there by 3 or 3:30. Here's the address:

Peachwood's Steakhouse
555 Highway 17
Santa Cruz, CA
(831) 426-6333

Looking forward to our meeting. Love//Dick

PS: Dino's obituary was published in the Santa Cruz Sentinel today. If you'd like to read it and add a remembrance, go to www.santacruzsentinel.com.

Hope You Can Make It To Dino's Memorial

2008-08-19T19:46:00.000-07:00

I'm just beginning to read all the e-mails you are sending (over 120 so far) and it will take awhile to respond, but I will, to each and every one of you. Such loving thoughts coming in from all of Dino's wonderful friends.

We picked the date for Dino's memorial: this coming Sunday, August 24 at 2PM in Santa Cruz. Here's the location:

Benito & Azzaro
Pacific Gardens Chapel
1050 Cayuga Street
Santa Cruz, CA 95062
(831) 423-5721 - Vince Azzaro

We sure hope you can make it. Afterwards, (we haven't picked the location yet, but it will be close by) we'll have a celebration, one that Dino will be most excited about. I'll tell you more as it comes together. (Any ideas, let me know.) Thanks for being there for us.

We love you,
Dick (Dino's dad) and MiMi (his step-mom or bonus mom) Scoppettone
Mary (Dino's mom) Scoppettone
Nick (Dino's brother) Scoppettone and his fiance, Amber
Chris (Dino's step-brother) Petrakis and his girl, Virginia

I'll Know What To Say

2008-08-18T20:42:00.000-07:00

My son, Dino passed away this evening a little after 8PM. My heart hurts to say it and I know yours hurts to hear it. But this was Dino's Journey. Over the months, on those nights when I thought about losing him, I stayed away from it by insisting on focusing on the present. For most of my life, I've been something of a rehearsed man, often planning things months in advance. No more. I told myself that I will know what to say if this day ever comes, and now this day is here.

My son was a beautiful man who belonged to all who knew him. No loner was he, but rather a blend of everyone he met and loved, interwoven with his buddies and their children and their parents and his workmates. Though he didn't raise a family of his own, he belonged to many families, and over the past weeks and months, we've had the privilege to meet them, all wonderful people.

When I finished a novel some years ago, he read it, and re-read it, and re-read it again, each time adding a missing comma or suggesting another way to punch up a phrase. And each time I trusted him. He and I spoke the same language.

When it came time for him to move on tonight, his mother, Mary was rubbing his hair, and around his bed, everyone touched him gently; my wife, MiMi; my son, Nick with his fiance, Amber; Dean's stepbrother, Chris and his girl Virginia; and his good friend, Andrew McGraw. Moments after he passed, Carlos arrived, as well as Dino's special friend, Andi who had flown from Seattle.

Over the months, as we saw all the responses to his blogs, it became apparent that there were many people we had never met. Can I ask a favor of all of you? We really need to touch you, whether truly hand in hand or by e-mail. Here's my e-mail address: dsco7545@comcast.net. If you knew my son or read his blog, would you e-mail me and tell me your thoughts? This journey of the last three months wasn't done alone, it was done with all of you.

I will let you know of the funeral arrangements as soon as I know. For sure, the gathering will be in Santa Cruz. Hold us in your hearts. We love you all. And my boy continues on the grandest journey of them all.

Mt. Hoffman

2008-08-13T10:08:00.000-07:00

Picture yourself on the summit of a high mountain in the Sierras. The view in every direction goes for hundreds of miles. To the south is Mt. Lyell and Mt. Ansel Adams, the east Mt. Dana and Mt. Conness, and about 3,000' below the tips of your toes lies Tenaya Lake. You have arrived at the 11,200' peak of Mt. Hoffman.

Years ago, when Dino was just a teen, we made the ascent to this glorious place and sopped up the most spectacular views and emotional highs in all of Yosemite. Mt. Hoffman is the geographic center of God's summer home, Yosemite National Park, and that day remains instantly accessable to me. During the climb, we found ourselves momentarily surrounded by a storm (the black rolling thunderheads were actually below us, encircling the mountain) and we took refuge in a small outcropping of rocks. Normally, one would never climb during nasty weather, but that morning began as a blue-sky day and we were three quarters of the way up the mountain.

The storm passed and we made it to the summit around noon, each of us silent, in awe, captivated completely by something we'd never before experienced. I quietly, almost respectfully, pulled a walkman from my pack and passed the headphones for each to take a breathless listen and fully complete the panorama - the Largo movement of Dvorak's New World Symphony.

I felt compelled to speak, "Someday, when one of you is facing a crisis of some sort or just a terribly stressful day, wherever you may be, whether in a high-rise or by the ocean, remember this moment. No matter what may happen to you, this place, this picture will always be here just as you see it now."

Let's visualize this for Dean. The view of a thousand miles, snow-capped peaks, a swirling gentle wind. That view is God. As you inhale, you feel millions of fresh energy cells fill your body, stimulating your senses like the dawn of a blue-sky morning. Breathing out, you watch the shriveling cancer cascade down the rocks, breaking into pieces and ultimately turning to fine dust. Inhale the good, exhale the bad. Do this whenever you think of Dean.

Chemo's Dosing Dem Cells Outta Me Body

2008-08-07T17:11:00.000-07:00

(As dictated by Dino to Dick)
Hi gang, Dino back in control here for the moment. It's now been 24 hours since they started my chemo treatment and there are lots of sighs of relief happening from a great many family and friends.

Thus far (knock on wood), I have yet to feel any seriously detrimental side effects; in fact, the drugs have made me lazy today and seem to have helped the pain level. We are unclear of the complete protocol, but we will let you know when we know more.

Very happy to be back at Alta Bates after five days at Alameda. We needed to be in Alameda to receive the pain pump. However, the quality of care at that facility simply does not measure up to what Alta Bates has to offer. To give you a short example, when I asked for a 10mg dose of Dilaudid, the docs at Alameda seemed so shocked and were so reluctant to provide this -- even though it was standard at Alta Bates -- that they made me wear a permanent EKG unit to check my heart function. This stupid unit caused me a considerable amount of discomfort and irritation for the five days I was there. I don't want to slag Alameda too much, but suffice it to say, we're all very happy to be back at Alta Bates.

Medically, there are a lot of niggling side issues that have kept us from getting chemo to this point, but when push comes to shove, we needed to begin chemo and blow out the cancer that's in my body. I won't bore you with the many details of these finer points that have held us up, but some were serious enough to force the doctors to err on the side of caution. Now, it's time to endure the protocol and take it as we go from there. If the treatment leaves me feeling anything like I do today, then I will consider myself to be truly blessed. Something tells me it won't be this easy the whole time, but we'll just take each day as it comes.

I have received several notes and e-mails recently indicating that I need to inject more of my presence back into the blog. I hear your messaging loud and clear. All I can say is that for the past two or three weeks, I have really not had the mental or physical energy to put together a substantial blog post. As we move through chemo and also deal with the recovery period in each cycle, I hope to begin a more reliable routine in which I can keep you all updated. A friend of mine said last weekend "We will always be here for you, but you need to sometimes make yourself available to us." I totally agree with that statement; each and every one of you deserves to know exactly what my current situation is. To that end, I have asked my Dad to take "dictation" which he is doing now and I will continue to use my parents as a resource so that you can read my thoughts through their fingers.

As for visitors, I know there are many of you that have expressed interest in coming to see me, and that makes me immeasureably happy. Unfortunately, my energy levels go up and down at a whim so often that making advance plans can be difficult. Please understand that most visits should be held to about twenty minutes or less; this is simply because several occasions of long visits have led me to pretty severe exhaustion and pain that is not easily controlled. I would love to see all of you guys, and I know that when the time is right, I will.

So that's the big news for the week. Now it's simply a matter of enduring whatever it is chemo has to offer. It may be a few days before I update again or I might have Dad or Mom help me with one. Outside of that, just waiting for football season to get started. Hope this blog brings you a little bit closer to where I am in the current moment. Keep livin', keep lovin' and enjoy your hot summer afternoons. With much love,

Dino

The Chemo Has Started

2008-08-06T21:59:00.000-07:00

As of early this evening, Dino is finally getting his first round of chemo (four different drugs with continuous drip over the next four days). This morning however, started with another bump. The surgeon who was to install the PortaCath (a semi-permanent port in Dino's chest to use mainly for the infusion of chemo drugs) decided that since Dino still has some sort of infection and a slighly elevated temperature, he wanted to wait until next Monday to do the surgery for this port.

Another depressing moment - until late this afternoon when a nurse came into Dino's room to say that they would be starting chemo shortly. I asked if she knew the port had been held up until Monday and she said that she had just spoken to Dr. Cecchi, Dino's oncologist and he directed her to start chemo immediately, port or no port. So, for now they are using the PICC line instead. Like us, Cecchi simply didn't want to wait any longer.

So, let's pray that the next four days will begin to knock back the tumor. I think we've got to put up the "No Visitors" sign again (until Dino gives the go-ahead).

I know there's little miracles happening here, so keep pushing them our way. This afternoon, after Mary returned to Santa Cruz (and prior to hearing of Cecchi's order to start right away), she sent out an e-mail to her group of friends asking them to pray for the removal of all these continuing obstacles. It was shortly after that e-mail went out that I called her from Dino's room to tell her that Cecchi said, "We're going now!"

And yesterday, some of you may have noticed a brief note in response to Monday's blog (from a fellow named Trent). I picked up on it immediately and contacted him. He's here in the Bay Area, and in 1992 had surgery for a "retro-peritoneal myxoid liposarcoma" - a 20 lb. tumor in fact. Almost identical to Dino. It seems he had been watching Dino's blog for some time and finally decided to weigh in. Since this particular form of cancer is so rare, we're hoping to put he and Dino together soon.

Sorry to be so short, but it's late and I'm really tired. Hang in there, gang.

Dick Scoppettone
Dino's dad

Baubles, Bangles and Bumps

2008-08-04T21:31:00.000-07:00

As most of you know, Dino has a new bauble, his SynchroMed II pain pump. Over the last four days, his doctor has readjusted it, slowly zeroing in on what will be the best pain management. Dr. Behravan's goal is to get him to a "3 or under" on the 1-to-10 pain level chart. I think Dino is probably very close to that now, but it's still a bit of a balancing act.

It feels to me like the pump may possibly need to be adjusted downward, primarily because Dino's spent the last day hallucinating quite a bit. Last night was one of those "no sleep" nights for both Dean and I because he spent the entire night talking to countless unknown characters, sometimes very loudly, sometimes singing, mostly unintelligible (except for when he told someone, a waitress I suppose, that "I'll have the scrambled eggs with bacon, but I'm not going to pay $1,100.00 for it!")

One of the bangles that accompanied the pain pump is a hand-held unit whereby Dino can give himself a "bolus" (an extra dose) every four hours if he needs it. He simply holds this device over the pump and presses several icons on a small computer screen to activate the bump-up. However, Dr. Behravan advised us today to hold off on the bolus for awhile because Dino appears to be addicted to the high levels of Dilaudid (I know, we don't like it either, but it goes with the territory) and thus it's time to begin a partial withdrawal down to a point that still regulates his pain but doesn't prompt hallucinations. So, the baubles and the bangles do serve their purpose, but nothing is perfect and we still have to get this one under control.

Regarding the bumps, we found ourselves saying shortly after his surgery (almost eight weeks ago) that things were probably going to get worse before they get better. I've kind of given up on that phrase and shifted into a different gear by saying that things aren't necessarily getting worse anymore - rather there's a continuing series of bumps that will be occuring for awhile. After all, we haven't started chemo yet (maybe by the end of this week), but we know that will be a bumpy road. And who knows what else is on the horizon.

I do know one thing, and maybe you can weigh in on this - we've got to get Dino mentally (and physically) back into the driver's seat. He's become accustomed to being waited on hand and foot (out of real necessity, of course), but he needs to take back some control for himself now. As an example, I ask him everyday if he wants to do a blog, but he passes on it. Same with having visitors, he doesn't want any. I know his world has gotten extremely focussed of late, but I think it's time to start the re-expansion process - time to get his juices flowing again. Let me know what you think.

Stay tuned for the chemo schedule. As soon as I hear, you'll hear. Love ya.

Dick Scoppettone
Dino's dad

The Pump has Landed

2008-07-31T12:01:00.000-07:00

After a three hour procedure late yesterday morning, the pain pump (we'll have to give it a name) has now taken up a good and proper residence just under the surface of Dino's left abdomen. We haven't seen it yet because it was still covered with gauze yesterday, but we expect that it might be felt as a slight bump similar to a pacemaker. It's about 3 1/2" in diameter and 3/4" thick with a catheter tube (also under the skin) that circles around to his back and into his spine. It represents the ultimate form of immediate pain relief.

Dr. Behravan, who performed the operation, says that Dino will finally be able to dispense with all the pills, patches, and IV's and rely solely on the pump for pain relief. I know you're exhaling with the same sigh of relief as us - his pain for the last seven weeks has been constant and unforgiving. I suspect he'll do a major blog on the issue of pain somewhere down the line.

It sort of feels to me like Phase One, if you want to call it that, is rapidly coming to a close. His surgery, recovery and pain management appear to be behind us now and so we move into Phase Two: chemo.

His oncologist, Dr. Cecchi has been pushing to start the chemo phase and, barring any other complications, I expect that will begin soon. There is a side issue, or complication if you will - his continuing bowel obstruction (I'm starting to sound like I'm the guest lecturer at a physician's seminar, this is not good, I gotta get back out into the sun). At any rate, the obstruction may be likely due to the spread of the tumor, but our preference is to start pounding away with chemo and address the bowel problem from some other avenue.

There, now that that's out of the way, let me say that today begins with goodness. All days do really. We just get sucked into dealing with the garbage first and forget about the more important things, like the love you're sending our way. As an example, from the many prayer groups pouring their waterfalls of wonderful thoughts over Dino, one put into their regimen yesterday a "prayer chain" wherein each member of the group took one specific hour out of their day to pray him through the pain pump installation. So, I'll say it again - today begins with goodness.

Dick Scoppettone
Dino's dad

Edna

2008-07-28T20:23:00.000-07:00

It was bound to happen sooner or later. Friday night a few of Dino's buddies dropped in, with the proviso to keep it short, fifteen minutes or so, but Dino responded favorably under the circumstances and the evening was bright and fun. This from a guy who, as we speak, has four bags of various meds feeding into a PICC line and a nasal drain from his nose to a collecting container. By Sunday he was basically paying for his indiscretions and so we've shifted into "No Visitors" mode for the rest of this week. But that's not the story here.

Saturday a few friends returned, among them Tracy and his wife Erica. Her mom was due to arrive shortly. During the preceding week, several of us had been discussing the issue of spirituality and were wondering if Dino had a spiritual adviser. His friends didn't think so and my only recollection was that Dean had been involved with a Christian group, Young Life some twenty years ago. Of late, we had not discussed the subject with Dino because he hadn't indicated that it was on his list of hot topics. That is, not until Edna arrived.

When Tracy introduced his mother-in-law, we had just stepped out of the room and down the hall for some knockout pizza that Chris and Virginia brought in. Edna's presence immediately filled the waiting area and my piece of pizza found its way to a side chair. She was a vivacious, dynamic lady, this Edna, and within moments, she had recruited everyone into a prayer circle inviting the Lord and his angels to take a whack at Dino's recent detour down Cancer Lane.

Normally, this would not be my thing, but then again I had never met Edna. Within moments, we were ready to dispatch last year's Super Bowl winners to the trash heap. She had met Dino several years ago, but assumed he would not remember her. We immediately towed her to his room - he immediately remembered her. (One could not not remember Edna.) Over the next twenty minutes, the room was filled with a wonderfulness that is best described as "You had to be there." She did a laying on of hands, this woman who said she wasn't a minister. Dino was filled with emotion (as were all of us) and he asked for a second round which, of course, she obliged. Then, as quick as she appeared, she was gone. I didn't get her number, didn't need to; I know she'll show up again.

Back to basic reporting. Today's Monday and only two days left until the install of the spinal pain pump. I won't tell you yet what we're going through with the insurance people just to pull this off. You'd only be pissed. I'm sure Dino will "elucidate" at some point in the future.

Regarding his pain level, the nights are the roughest. Last night he was up to a six on the pain scale. This may be a combination of both surgery pain and tumor pain. The sarcoma continues to grow (though by how much we don't know). That's why chemo MUST get underway as soon as his pain is consistently manageable. His condition is serious, and though these blogs don't spend a lot of time dealing with the downside, we're all aware of it. The cakewalk ended long ago - now we're into the tough stuff. Consequently, the "No Visitors" sign is posted this week - with Dino apologizing profusely, which of course, he doesn't need to do. By next weekend, we'll see how he's doing and take it from there. Naturally, you'll be the first to know, so everybody stay strong and keep the faith. Let's blast this sucker to smithereens! Thanks and all our love.

Dick Scoppettone
Dino's dad

A Nice Little Pik-Me-Up

2008-07-25T15:53:00.000-07:00

Dino got a Pik line put line put in today (actually PICC, but can't remember what it means). It's a type of intravenous line that allows for delivery of pain meds AND nutrients in the same dual tube. Much better than the old IV that keeps getting moved from arm to arm to arm. (I think Dino's gone thru six or seven arms worth of various needles).

He keeps saying "Cancer's not for sissy's" and there's some real stories that have occurred over the last few 3AM's - way more than I can write about, but when he gets his energy back, he'll talk it through wit ya. Mary and I are staying in his fifth floor "suite" at Alta Bates - big room with a great view which he has yet to really enjoy. But he will soon. The spinal pain pump got approved yesterday and gets put in next Wed. (I know, we don't want to wait either, but . . . please see title of last blog).

At any rate, you know I like to keep it short. This is Dino's Journey and he's got lots to tell so stay tuned. For now, I'll just borrow the words of an old rocker, "It's been a long, strange trip."

Dick Scoppettone
Dino's dad

Hurry Up and Wait

2008-07-21T09:51:00.000-07:00

Dino had another bout with a bowel obstruction and got readmitted to Alta Bates on Saturday. He'd been attempting to stay hydrated as well as keeping up with the prune juice/stool softener regimen, but it just wasn't enough to stay ahead of the constipation effect from the Dilaudid pills. Actually, we're all somewhat comforted that he's back in the hospital because we know he's getting immediate attention and that all the bases are covered.

Speaking of which, there's a couple of future bases we're seeking to get covered ASAP. First, the installation of a spinal pump which will circumvent the need for all the pill taking and which doesn't have the nasty constipation side effects. Today will be Day #6 in the wait for Blue Cross to approve this. We're not anticipating a problem with the authorization - it's just that they're obviously not on the same time frame we are.

Second, we're looking to start Dino's first round of chemo also ASAP because there is some evidence that the tumor may be growing back. Though it's not crystal clear yet (they can't see it on the latest CT scan), a combination of factors seems to be pointing in that direction. If it is growing back, we don't know at what speed or how large, but everyone agrees that this type of tumor responds well to chemo and so it's time to get on with the program. Dr. Cecchi, the Alta Bates oncologist is unavailable until Thurs. so we're hoping that Thurs. may be the start date.

As for Dino's spirits, he's awake and conversing and very much wanting to get this thing going as he has been all along. Those of you that have experienced similar health issues know that sooner or later the "roller-coaster effect" can begin to appear (one day up, next day down, hurry up and wait, etc.). We're kind of in the middle of that right now, but once we get the first round of chemo started, things hopefully will become a little more predictable (and comfortable). That's not to say that the chemo doesn't carry with it its own associated problems, but at least we'll know that a program is finally underway to start knocking back that tumor.

Dino loves hearing your comments so keep 'em coming. Don't know when he'll start doing his own blogs again (he asked me to bring his laptop to the hospital today and I'm doing so, but don't know if there's a WiFi setup there). If he doesn't jump back on the blog, I'll keep you posted on the progress of the pain pump install and chemo startup. As always, we love you and thanks for being there.

Dick Scoppettone
Dino's dad

Major Payne

2008-07-16T08:57:00.000-07:00

"Ain't nothing I can do, but... ramble on."
-Led Zeppelin

Hi folks,

As you probably have noticed, my blog entries have slowed quite a bit. In the past, this could easily have been chalked up to my normal laziness, and the fact that quite often I will begin a project with much enthusiasm, only to lose interest halfway through and move on to other endeavors. Many of you that have worked with me or have known me a long time can probably rattle off quite a few examples of conversations with me that approximate the following:

You: "What have you been up to these days?"
Me: "Oh, I'm doing Project X, it's gonna be awesome! Just you wait and see, darn tootin'!"

Two months later...

You: "Hey, how's Project X coming along?"
Me: "Ohhhhhh... uhhhhh... sort of on the back burner at the moment... I'm working on Project Y right now, I think it's going to be really cool. Really boss, I'm tellin' ya."

And Project Y begets Project Z, which begets Project ZZ, which begets Project ZZZ, which begets me taking a long nap. Eventually, nothing gets done on anything.

Well, that's not the case here, which is both good and bad. The good part is that I am still very excited about writing this blog and keeping everyone updated on my journey. I know that I have a lot of friends and family that check in several times a week and it's really gratifying to me to know that so many people are keeping tabs on me and (hopefully) enjoying my writing. And I know that once my journey is mostly through, I will be able to take this blog and use it to help others that are going to follow a similar path.

The flipside is that as of late, I just haven't had the energy to write. I've had tons of time, but energy is a whole other story.

Actually, maybe "energy" is not quite the right word... it's hard to describe what's keeping me from writing more often, but if you had to sum it up in one word, it would probably be "pain."

I'm a little over five weeks post-surgery and unfortunately, I am still suffering a lot of abdominal pain where my surgical scars are. This pain is not intermittent, it does not go away for any long periods of time, and it makes my life quite challenging in a variety of ways. I'm taking a variety of medications to try to control the pain and while some of them have had an effect, nothing has served to eradicate the constant discomfort that envelops the right side of my torso, both front and back.

Those that have seen my scar can easily understand why this pain is occurring -- all told, the incision is at least 10 inches long, maybe even a foot long. (Look for the new "Dino's Scar" bacon and turkey sub at Quizno's, slated to hit the menu next month. It looks funky but trust me, it's tasty.) To complicate matters, I had a kidney removed, I lost my right adrenal gland, and I had small parts of my liver and my bowel taken out as well. Just about every medical professional I've spoken to has told me that such prolonged pain is not uncommon after a surgical procedure like the one I had, which was a major surgery in every sense of the term.

So for the past few weeks, life has pretty much been a waiting game, as each day I struggle to find comfortable positions in which to sit or lie down (I can't lie flat, so I have a boatload of pillows propping me up). If I'm lucky and the medications are working and I find a good spot on the bed, sometimes I can go for an hour or two with very minimal discomfort, and life ain't so bad. Otherwise, well, let's just say I spend a whole lot of time adjusting pillows, getting up and walking around, switching chairs for two minutes only to move back to the original chair I was sitting on, etc.

I know that this pain will pass; I just don't know when, but it has to be soon, because I need to begin chemotherapy before the month ends. Yesterday, Dad and I met with a pain specialist in San Leandro who prescribed another couple of specific pain meds for me and is scheduling a procedure to actually put an internal pump into my stomach that will release special pain medication directly to the affected areas. It's an outpatient procedure and it should really make life a lot easier once it's installed, which should be early next week. With this pump, the doctor can control which meds are used and can vary the dosage depending on my level of pain, but most importantly, the pump targets the stomach abdomen directly and doesn't waste time on the rest of my body, meaning that it can use far less medicine to accomplish the same exact results we're getting now.

Indeed, medicine was a big part of last week's problem. I had been warned by several people -- both friends and physicians -- that a major side effect of taking dilaudid and other opiate-based medications would be constipation, and that I would have to take steps to offset those effects. To do so, I was taking an over-the-counter stool softener that seemed to work okay. However, towards the end of last week, as my pain started to grow and my body's tolerance for dilaudid began to increase -- forcing me to take more of the drug to achieve the same level of relief -- I didn't increase my intake of the "antidote" as well. By Wednesday of last week I was slamming dilaudid like never before, but as the day crept along, I began to notice a new pain.

I would assume most of you reading out there have suffered constipation at one point or another. I don't need to get into the details other than to say that your typical garden-variety constipation really sucks. Well, this drug-induced constipation sucked times ten. By Thursday, in addition to the normal abdominal pain, I was getting fierce shooting pain on the other side of my body, and all my best efforts to relieve myself were for naught. I had really jacked up the dosage of stool softener and my parents brought in the dreaded milk of magnesia, but neither seemed to have an effect.

So, Friday morning at 3 AM, after enduring a major bout of piercing pain, I had Mom drive me to the emergency room. My hope was that they would give me something to clear me out and then just let me go home, but of course, they admitted me as a patient, and I spent two more nights in the hospital. The constipation situation resolved itself on Friday afternoon when, just after checking into my room, I bolted to the restroom and gave birth for the second time in five weeks. Check the Guinness Book next year; I'll certainly be listed as the only male to give birth not once but twice -- first to Kuato, and then to whatever concoction of stuff it was that was jamming up my bowels for three days.

(By the way, ladies, I'm going to assume that giving birth to a child is even more laborious and painful than my Friday experience, and for that, you have my eternal respect. If my future wife is out there reading this, just know that once we have our first child, I will take you to a fine meal at BK or Wendy's to show my appreciation for the ordeal you will have gone through. Guys simply have no way of understanding what that sort of pain is like, but I think I got a slight glimpse after Friday's fiasco.)

Hospital was more of the same -- poking, prodding, no sleep, crappy TV, continual discomfort -- and I'll share all my hospital thoughts in a future post. Just know that I lobbied hard to be released on Sunday and so they let me go after giving me more prescriptions and yet another protocol to follow to try to control my abdominal pain. I now have over 20 bottles of pills strewn about my bathroom counter, some of which I use on a daily basis, some of which were prescribed several weeks ago and are now "obsolete" in terms of what I'm supposed to be taking in order to control the pain in my gut.

So, here I am on Wednesday morning. Dad just left, Mom is coming up in a couple hours to take his place and stay for a few days, and I'm actually not feeling too badly. I didn't sleep well, but I ran a hot bath at 5 AM and sat in it for a while, and that seemed to relax my body enough so that when I got back into bed, I was reasonably comfortable. Maybe I've found another outlet to provide at least some short-term relief... we'll see.

I'm slowly and cautiously getting back to eating solid food and I'm making sure to take all the anti-constipation meds in copious doses. So far there have been no problems, and I need it to stay that way. My initial guess after surgery was that I'd begin chemo before July was over, but I thought I'd be much further along in my rehab by July 16th than I currently am at the moment. I haven't really gained any weight back, and two different stays in the hospital have stunted the amount of rest, energy and strength I've been able to accumulate -- things that I will need in large quantities in order to endure the chemotherapy protocol.

As far as chemo goes, we're going to have to start it soon. Dr. Jacobs at Stanford took a look at my latest CAT scan from this last weekend at the hospital and expressed a bit of concern that the small sarcoma seedlings that were left over from the operation are beginning to grow. This is of no surprise at all, but it does mean that I'm going to have to begin chemo treatment in short order; I'm not going to be able to wait until September, for instance, or wait until the scar is completely healed and I've gained 15 pounds and am ambling around pain-free. No, it's not a best-case scenario, but like everything else about this journey, I'll just have to suck it up and get it done. I have all confidence that the chemo regimen, as much as it will suck, will crush the remaining cancer, and if I have to endure the regimen in sub-optimal shape, well, so be it. No one ever said this was gonna be easy.

I continue to be inundated with gifts, requests for visits, emails, cards, and everything else. You guys have no idea what this means to me; it really is one of the things that keeps me going during the tough times, the long nights when the pain is insufferable and the clock moves at about an hour per minute. My support group is everything to me and though I sound like a broken record, I want to say again: thank you for those prayers, positive thoughts, gifts and cards, and everything else. I'm behind on my personal correspondence and until I get the pain under control consistently (let's hope this internal pump next week will have a major impact), some of you may not hear back from me, but trust that your thoughts are always heard and they keep my spirits in the stratosphere, even when it feels like this situation will never end.

The thing is, I know it will end, and I know there is an amazing life waiting for me on the other side of this, and even though that point might be many months away, the knowledge that I will survive, combined with the power of my support group, provides me with a strength that I'll never be able to quantify. My parents wonder why I don't seem to get depressed or why I don't spend a lot of time crying, and the fact is, I just don't feel that way. I'm sure I will at some point, but overall, I feel like this is just the path that has been laid before me, and I must follow it, and it will lead to good things for me and for everyone else that is following me and carrying me on their shoulders through the rough patches. It might suck at times, but we'll all be stronger for it in the end.

At the same time, while I don't ever really get depressed per se, I have to say that the pain typically leaves me wanting to just be alone. When the pain gets to be too bad, I can't really talk because even talking for 20 seconds starts to constrict my abdomen area and causes further discomfort. Even if I could talk, however, the fact is that these days, I'm in pain often enough that most of the time, I really prefer to just lie in bed and read or watch TV by myself.

A lot of you have inquired about visiting and although I feel badly about it, I've had to tell just about everyone to hold off for now. Please understand that it's nothing personal; it's simply that until I get to the point where I'm comfortable enough to handle visitors for any amount of time, I just need space to rest and heal. My parents can attest to the fact that even when it's just me and them sitting in the living room watching TV or something, I have very little to say and most of the time I just bag out and head to my room to lie down anyway. So, even for those of you that say "we don't even have to talk, we can just watch TV together or something" -- which is a kind sentiment that I've heard from many friends -- please understand that it's more just a matter of me wanting to be alone until I'm healed enough and pain-free enough to start being more social. As George Costanza would say: "It's not you, it's me!" Well, even though he was full of crap, in this case, it's true. Really. Honestly.

So, that's my ramble for Wednesday morning. I expect to spend a lot more time in bed today, reading on my Kindle (man, I love that thing) and catching up on the sleep I didn't get last night. I'll try to jump back tomorrow to start catching up on other thoughts I've had from the past couple weeks of near-silence you've seen on this blog. Reminder: my friend Andi is still working on donations for her marathon run, so check out http://doitfordino.blogspot.com/ if you haven't already.

And finally, a shout-out to my wonderful brother Nick, who turns 35 today. Happy birthday, kid. Wish I could be there to spend the day with you, but I'll talk to ya on the phone. Enjoy the day and don't worry about the fact that you're getting old -- it happens to all of us.

As for that "enjoy the day" thing, that goes for the rest of you too. Thanks for reading and I'll be back soon.

With much love,
Dino

Sunday Night...

2008-07-13T19:46:00.001-07:00

...and I'm back home. Surgery scar pain is still the same (fluxes from okay to pretty bad) but the bowel issue is gone, which is why I went there in the first place. Just wanted to let you all know, and I'll have a longer update tomorrow once I get a handle on the pain and I get some much-needed rest. As always, thanks for your love and support.

With much love,
Dino

Back to the hospital again?

2008-07-11T19:39:00.000-07:00

'fraid so. Dino's mom brought him to Oakland's Alta Bates Emergency this morning about 3AM with extreme bowel pain from constipation. That's sounds kinda graphic, but there's really no other way to say it. Dino had bumped up his pain meds as per the doctor's orders, but one of the side effects of high doses of Dilaudid pills is constipation. So it's an endless tradeoff - trying to hold the incision pain to a 3 or 4 without going through the roof on pain pills. He asked if I'd do a quick blog to bring everyone up to speed, so I think I'm gonna do a "Just the facts, Ma'am" thing for tonight.

I got there around 11 this morning and he was still in emergency - waiting for admission to a hospital room. When he finally got "officially" checked in around 1:30 to Room 2386 and cranked up the hospital bed to "Dino position", boom . . . off to the bathroom and a long-awaited major sendoff to all the Milk of Magnesia he's ingested over the last several days. What a relief!

The doctors had done an earlier CT scan and were guestimating one of two scenarious: either fluid accumulating in his stomach or possibly tumor growth in his bowel. So they started him on a nasal drain which they eventually removed around six this evening. Still no clear diagnosis, though when I spoke to him awhile ago, he sounded OK (probably because the nurse was about to install the "Sister Mo" pump like he had at Stanford). He said the bowel pain was gone, but the incision pain was still a bit more than he wanted to tolerate. This incision recovery seems to be taking forever.

Mary and I had our first formal meeting with Dino's Alta Bates oncologist yesterday. He hasn't decided on a chemo regimen yet because he wants Dino to be more recovered from the surgery. He said the chemo treatments for this type of sarcoma are pretty rough and Dino needs to get healthy before he begins the program.

So that's the lowdown for tonight. I realize, as all of us go through the changes resulting from Dino's "life-changing" experiences, it's really easy to move in and out of "hospital talk". It's easy to lose focus and forget that the rest of the world is still going round and round out there. For Dino, his focus is the tightest - still pointed unflinchingly at beating this thing - and the same applies to us, even more so. But, nonetheless when he told me this afternoon that he wasn't depressed, I know that's one emotion that will visit him sooner or later. So keep sending your love - he needs it, we all need it.

Dick Scoppettone
Dino's dad

Brother's Day

2008-07-06T13:08:00.000-07:00

"You can pick your friends, and you can pick your nose, but you can't pick your friend's nose."
-Ancient Chinese proverb

"You can pick your friends, but you can't pick your family."
-Ancient Chinese proverb

"We need more Calgon."
-Ancient Chinese secret

Forgive me for perhaps paraphrasing the sage words of Confucius, but I feel like at least one of the above quotes is pretty relevant to what I want to talk about today. When you're done reading, I'll let you circle back and figure out which quote pertains most to what's on my mind this afternoon.

Here's something I haven't mentioned as of yet, but it falls into the "insult-to-injury" category: when my dad and I returned from the hospital last Friday, he went to go move my car from its spot in the street in front of my house to put it in the gated back lot. My mom had been staying at my house several days prior to dad coming up to pick me up from the hospital, and she had been parking her own car in the gated lot, so we'd been keeping my car in the street.

Well, my mom went home around Tuesday of that week (the 23rd) and drove her car back to Santa Cruz. When my dad and I got back to my house on Friday the 26th, my passenger window had been smashed in and my car stereo had been stolen. To cap matters, I also got a parking ticket for being on the street during street sweeping hours the day before. Typical.

None of this is my mom's fault; in my drug-induced pain-filled haze in the hospital, reminding her to move the car out of the street-sweeping zone and also take out the stereo (she wasn't ever aware that it had a detachable faceplate) was the furthest thing from my mind. So, oh well, stuff happens.

Actually, the good news is that the insurance deductable is only $100 to replace the window and the stereo, and the estimate will allow me to buy a brand new stereo that has full iPod and Bluetooth support, which the other stereo didn't have. It's almost like I'm sorta coming out ahead on the deal, if you choose to look at it that way. My new stereo will have crystal-clear iPod support for the new iPhone I am going to get get next week.

Back to the point: we moved the car back into the gated lot and have left it sitting there for the last week, with the passenger window smashed in and hundreds of shards of broken glass, papers and other assorted detritus scattered inside the cabin. The thought of cleaning up that huge mess was not something I was relishing; I knew it would have to be done before we took the car in to get repaired, but I have neither the energy or even the physical ability to do such a thing at the moment.

Yesterday afternoon, my brother Nick and his fiancee Amber visited and it was the first time I had seen them since the surgery. It was really great to see them, and we all went and had lunch and then came back to the homestead and hung out, chatted, played some video games, watched TV, and generally enjoyed some quality time together. But at some point during the afternoon, Nick and Amber grabbed a ShopVac, a broom and dustpan, and without making any sort of fuss about it, went out and cleaned the car's interior spotless.

I didn't ask them to do it, nor would I have ever expected it from them, but they did it nonetheless -- and this is one of but many examples of how my brother is stepping up during this difficult time in a completely selfless way to help out however he can. Especially given the own path he's traveled throughout his life, to see such amazing acts of his unconditional loving behavior means the world to me, and I find myself unable to describe precisely how much I admire him for being the special human being he's become.

Nick and I were never close when we were growing up. We are fairly different people with different interests, and the three-and-a-half year age difference meant that we didn't hang out a lot when we were in school. I was always into football, put a decent amount of effort into school, and was pretty good socializing with groups of people; Nick was more introverted, sort of a skate rat, and academics was the furthest thing from his mind.

My high school years passed into college and I'd see him only occasionally, on random trips home, and even then, we didn't have much to talk about. I'd ask him questions, and get a lot of one-syllable answers in return. He didn't seem too interested in what was going on with me, so as a result, I sort of switched myself off and stop trying to reach out to him. We spent the better part of our twenties only seeing each other a few times a year and grunting out cursory salutations on those occasions when we were forced to interact.

Then, shortly after I turned 31, my family got a real bombshell -- Nick had decided to check himself into a drug rehabilitation facility. I'd always known Nick was very involved in doing certain kind of drugs -- pot, mostly, from what my guess was -- but it turns out that was just the tip of iceberg. In the course of his therapy, Nick told us that he had begun smoking pot in his early teens and then graduated to many, many other types of drugs over the next 15 years -- including some very serious stuff. In 2001, he finally hit rock-bottom and decided to do something about it, and began a 12-step program to get himself clean.

(I should note here that I asked Nick today if I could mention his drug addiction on this blog, and he agreed, so I'm not violating his trust here by writing about it.)

That was seven years ago. Since then, he's fallen off the wagon once, maybe twice (I'm not sure, but regardless, it was fairly early on in his rehab), but for the past several years, he's been completely clean -- and he's been a completely different person.

As callous as it sounds, the fact is that the pre-2001 Nick is not someone that I really wanted to associate with. As the aforementioned saying goes, you can pick your friends, but you can't pick your family, and Nick is not someone that I would have ever voluntarily chosen to be one of my family members. I'm sure this is a two-way street and he might be saying the exact same thing about me; my stance towards him back then was very condescending, and I was not very supportive of anything he had to do, acting more like a judgmental nag than anything else.

But that was then, and this is now.

Since becoming clean, Nick has developed into a caring, mature, responsible, intelligent, witty human being. He is someone I genuinely enjoy being around. When the family gathers for dinner back in Santa Cruz, or we get together for a group function of some sort, or he comes to visit me, or whatever the case -- we don't need an excuse, really -- I really look forward to seeing him. He's got a great sense of humor; he's very quick and subversive, and some of the things that come out of his mouth make you think a bit before you realize that he's making a joke on a slightly deeper level than some throw-away silly statement.

Nick has started his own contracting business in Santa Cruz and is trying to drum up business, and I have no doubt that he'll be successful in his endeavour. He's very talented when it comes to construction and has been invaluable in helping my mom remodel parts of her house as she gets ready to put it on the market (when the housing market finally begins to rebound a little bit, hopefully sometime before Spring 2064).

Anyway -- a couple months ago we had Mother's Day, and last month there was Father's Day, but unfortunately there's no such thing as Brother's Day. That's not going to stop me from declaring today Brother's Day and dedicating it to my brother Nick. Ever since he learned of my condition, he's been there at every turn, asking what he can do to help, calling to check in, and he's already make a very major sacrifice in his own life to help facilitate my mom being able to come up and live with me five days a week to take care of me. It's impossible to sum up how that makes me feel.

To me, Nick is living proof that people can and do change, and that things have a way of working out for the better. The evils of addiction cannot adequately be described to those that have never dealt with them -- I fortunately count myself among those lucky people that do not have addictive personalities -- but Nick has battled, he has overcome, and he's become an amazing human being that I am proud to call my brother.

Of course, it would be remiss of me not to mention that a big reason for Nick's growth and transformation is the presence of Amber, an amazing, strong, beautiful woman in her own right. Amber is a single mother of a darling six-year-old, Alex (one of the best-behaved kids I've ever met, and I'm really looking forward to coaching him in football someday), and she's a recovering addict as well. She's extremely strong-willed individual and she has a way of kicking Nick in the butt when he needs it the most. It's not an understatement to say that I think she's the best thing to ever happen to Nick, and I'm looking forward to having her be an official part of the Scoppettone family when they get married next summer.

Nick and Amber are coming back up to visit next Saturday and I'm already looking forward to spending the day with them, just the three of us, with nothing on the agenda. I'm sure we can figure out some sort of trouble to get into between now and then.

That's all for me. Thanks for taking the time to read this particular post; it's very personal, but it needed to be written. Those of you that know my brother but haven't seen him lately should know that he's doing great, and for those of you that have never met him, well, I hope someday you get that privilege. I can pick my friends, but not my family -- but in this case it doesn't matter because Nick is someone I'd choose to have as a friend even if he wasn't a blood relative.

And just so long as I don't have to pick his nose, everything should be just fine.

With much love to Nick and Amber, and to everyone else,
Dino

Marathon

2008-07-03T16:26:00.001-07:00

From first to last, the peak is never passed -- something always fires that light the gets in your eyes

The quote at the top of the page, just below the title of this blog, is a lyric from a song called "Marathon" by the band Rush. I chose it specifically because from the beginning, I knew this entire journey would be a long one, not a quick sprint. There are some serious illnesses that can be addressed in short order such that the body is back to full health within a matter of days or a few weeks, but the Big C usually doesn't operate that way.

In terms of an actual physical marathon -- the 26.2 mile run undertaken typically only by Greeks or sadists -- well, I've never run one of those. Never even come close, actually; I think the longest I've ever run at one time is about five miles, if that. Running has never really been my thing, but I have lots of friends that love to do it, and while it's hard for me to understand their passion, I do admire them greatly for it.

Now, it appears that a real honest-to-goodness marathon will be part of my journey. It won't be me running it, of course -- I've got a few other things to deal with for the next several months, not to mention the fact that I can barely walk straight as it is, much less run -- but rather a very good friend of mine who will be running the Silicon Valley Marathon in October in my honor. Andi Love, someone I've known for almost 20 years, is one of my dearest friends and she recently signed up for the marathon, and hopes to use her own journey as a focal point to raise money to help cover some of my medical costs.

Andi is 36, a happily-married mother of two that now lives in Seattle, but like me, she grew up in the Santa Cruz area. We didn't go to the same high school -- she went to snooty Aptos while I matriculated at the far more down-to-earth Santa Cruz High -- but we met through mutual friends just after I graduated from high school. We hit it off instantly and two decades later, we remain extremely close.

She's neither Greek nor a sadist (so far as I know), but still, she's run at least one marathon in the past so she's been down this road before (pun intended). That doesn't make the training and the race a whole lot easier, but at least she knows what to expect. As of yesterday, she's started her own blog at http://doitfordino.blogspot.com/ to document her training and to discuss the various aspects of the fundraising. I encourage you to check it out on a regular basis so you can see how things are coming along. She's also started posting comments to my blog under the name "Team Dino," so when you see those comments, you'll know it's her.

I've received so much support from you all already -- gifts, cards, loving thoughts, emails, letters, you name it. Your generosity is truly overwhelming and without question, it has lifted me up and carried me through some not-so-pleasant spots, and will continue to do so. I know that some of you have inquired as to how to assist with any exorbitant medical bills (really, are there any other kind?) and so I would suggest that you get in touch with Andi for more on that -- you can contact her through her blog.

Well, it's almost the 4th and the weather here is gorgeous -- I hope that everyone will get to enjoy some much deserved time-off for a three-day weekend. Whether you're spending that time on the couch (like me) or training for a long run (like Andi) or on the beach or in the mountains, make sure to viva la vida -- and throw down a beer for me if you get the chance. It's been a while since I've had one!

With much love,
Dino

Same Old Same Old

2008-07-02T14:06:00.000-07:00

Hi all,

I've got a little window here where the pain is minimal so I'm gonna jump back on the blog and catch you up with what's going on with me. The short story is: not much. I haven't gone anywhere in the last four days; instead, my days and nights are a constant cycle of resting, sleeping, playing video games, reading on my Kindle, watching TV, and above all, trying to stave off the pain from the surgery.

It's been just over three weeks since the procedure and the pain from the incisions is still quite noticeable. It's hard for me to say there's been any substantial improvement -- there are periods where I almost don't hurt at all, but there are other times where I have to sit and breathe deeply just to mentally control a flare-up of pain. There doesn't seem to be a real obvious pattern regarding when the pain comes and when it goes, but then again, I'm hardly ever completely lucid, so it's difficult to say.

Yes, I'm continuing on the drug regimen prescribed by the docs at Alta Bates. This includes two Methadone pills a day, a smattering of dilaudid, and a pain patch that goes on my arm and gets replaced every three days. You'd think that with such a barrage of medication, I wouldn't feel a thing, but alas, the pain still finds ways to creep through. At the same time, the meds leave me in a fairly continual groggy state in which I'm constantly riding the line between being asleep and awake, and at night I am prone to talking out loud in my bedroom while I am in this half-asleep state of dozing, holding conversations with people that aren't actually there. Funny thing is, I'm usually aware of when I'm talking out loud in this 'dozing' state, but I still do it anyway. Just a really strange side effect of this medical mixture, I suppose.

Out of curiosity, anyone else out there have extensive experience with pain meds? Did you have any crazy side effects? I'd love to hear any stories from our devoted readers regarding their experiences during rest and recuperation.

Friday is the 4th and many people I know are heading out for a holiday. My dad's birthday is on the 5th and I'll spend some of the day with him, and we might go outdoors somewhere (as in, stepping outside the doors of my home for a few hours), but otherwise, I have no set plans for going out and about, and I'm certainly not going out of town for the weekend. Had this whole cancer nuisance never popped up, I'd be in Hawaii right now, celebrating the marriage of my good friends Priscilla and Dave. I'm really sad I can't be there for their big day, but I know they understand, and I'm sure everyone's having a blast out on the islands. I'll tip back a fruit smoothie in their honor -- congrats, you two, and my very best goes out to you from the mainland. I'm there with you in spirit, without question.

Well, if you dart off for a long weekend, have a great holiday. I'll try to check back in the next few days with some more creative stuff (rather than a post like this one, which is solely "here's what I did the last couple days"), and until then, I hope everyone enjoys their time off. Also try to remember what the holiday is all about, if only for a moment: one great way to do this is to check out the HBO miniseries John Adams. It really brings home the story of America's struggle for independence, and the actors playing our founding fathers really nailed the roles (and I can say this with authority because, of course, I witnessed the real events back in 1776). Rent it on DVD if you're looking for something to do.

Happy 4th of July, everyone...

With much love,
Dino

Home (Again)

2008-06-28T11:35:00.000-07:00

Hi all,

It's almost noon on Saturday and I'm back at Dino HQ, working on the home desktop and, all things considered, feeling pretty good.

I checked out of the hospital yesterday afternoon and was given a variety of medications to help control my pain. So far, I have no complaints -- there is the usual stomach discomfort from the incisions, but nothing is too overbearing, and my home bed and all its attendant pillows were quite a bit more comfortable than the hospital bed.

Last night I turned the lights out at 9 PM, and dragged myself out of bed at 8:30 this morning. No, I didn't sleep soundly the entire time -- there was lots of intermittent dozing, occasional forays to the bathroom, and periods of trying to find a real comfortable sleeping position -- but overall, it was far more rest than I've had in the last week. I expect that to get better on a nightly basis as the pain subsides and I get used to being in the home environment.

As I wrote last week when I came home from the hospital the first time around, there is definitely a culture shock in moving from the hospital to home, especially when you factor in the drugs I'm taking and some of their side effects (in this case, general drowsiness and a decrease in lucidity). After a week of constant interruptions day and night, you come to expect these sorts of things and when they don't happen, as was the case last night, the groggy mind tends to ask itself "wait a sec -- how come nobody's busted into my room in the last hour to check my pulse?" Like everything else associated with my recovery, this too shall pass.

This morning I brushed my teeth and shaved my face clean. My head of hair is far too long now, especially given how thin my face has become, and I'm going to have my mom give me a severe haircut tomorrow when she comes back up. (Back in the day, when bowl cuts were all the rage, she used to cut my hair on a regular basis. That ended around 1984, when I finally figured out that it wasn't 1975 anymore.) Once chemo begins, I'm going to shave my pate completely clean anyway, but for the next few weeks, I at least want to keep it in check so that it's not spazzing out all over the place.

Aside from that, I'm gonna rest and relax for the duration of the weekend. The pain meds are still leaving me drowsy and a little bit out of it at times, so I'm not sure about visitors quite yet, but when next week starts and I have a bit more energy, I can probably host a few people here and there for short periods of time... we'll see.

That's about it for right now. I'm off to read on my sweet new Amazon Kindle, maybe play a video game or something, and work in a nap (or several). I hope everyone enjoys their weekend -- get on outside if you haven't been there already today!

With much love,
Dino

No Rest For The Weary

2008-06-26T11:23:00.001-07:00

Sorry about the lack of posting but I've been a bit out of it the last two days as the Alta Bates doctors have struggled to come up with an adequate level of medication for my pain -- either it's too much or too little, but it's been tough finding that "sweet spot."

For the most part, the various medications I'm on are doing a decent job of dulling the pain, but it's still there. I'm not sure if it's ever going to completely go away until I'm healed, though, so maybe it's supposed to sort of always be there. Life tends to be best just after I get a shot of dilaudid, but when that wears off, the pain comes back.

Yesterday my pain doc upped both the available frequency and the dosage of dilaudid in pill form, so in my eagerness to control the pain, I had a shot and three pills at 11 AM and then again at 1 PM. Shortly thereafter, I was a groggy mess -- definitely too much medication. Whoops. I gave it several hours before taking anything again so I could get my mind and body back under control.

So, here it is Thursday mid-day and I've received several texts and emails asking if I'm okay, since the blog has been out of commission. Thanks for the concern -- I'm here and I'm fine, and in the "Best News of the Day" Dept., it looks like they are going to send me home tomorrow with two new pain med prescriptions. The thought of my own bed and some unimpeded rest is tantalizing.

See, as I've written before, hospitals are not a place for people to actually sleep. There are a variety of reasons for this; for me personally, one is that since I've been here at Alta Bates, I've been on constant IV drip nutrients. The good side of this is that I've gained a little weight -- you can see it in my face and feel it in my gut. The downside is twofold: a) it suppresses my appetite (so I haven't eaten much since I've been here) -- but more importantly 2) it keeps me constantly hydrated and constantly having to relieve myself. We're talking multiple times an hour here. Ergo, do the math: it's impossible for me to sleep for any large stretches of time because I'm continually needing to go wee-wee!

(Sorry for the above terminology, but we had to change the original description since this is a family blog. --Ed)

And remember how earlier in the week, I said that the nurses here were far less intrusive than they were at Stanford? Well, scratch that. Bottom line is that, during business hours (5 AM to around 11 PM), most hospitals are probably pretty much the same in terms of how often they will disturb a patient for any number of things. If you can grab some sleep in the off-hours (which, thanks to the aforementioned IV drip, I really can't), then all power to you -- but from before sunup until after sundown, there will be any number of nurses, nursing assistants, doctors, surgeons, clinicians, dietitians, service volunteers, custodians, specialists, and the like who will come and go as they please, performing their various tasks both in your room and on your body, guaranteeing that you will not sniff an ounce of undisturbed rest for the vast majority of your day.

It's not that I don't think these people are unnecessary or that I don't appreciate them; everyone's got a job to do and for the most part, all the pieces fit together to move the patient forward to the point where they can go home. It's just that at certain points, the timing of the whole thing is actually comical -- for instance, I'll get a pain shot that leaves me sleepy and relatively pain-free, and all I want to do is catch some shut-eye. Then, over the course of the next 90 minutes, I will get the two-cursory-door-knocks-and-then-enter routine from:

* An assistant who needs to take my vitals;
* A surgeon who wants to check my stomach to see if the scar is healing;
* A custodian who is swapping out the garbage bags;
* A clinician making her rounds, who wants to talk about medications I'm taking;
* A nurse, who checks in to see if I need anything;
* A dietitian, who wants to get my food selections for tomorrow;
* Another dietitian, who wants to talk about my appetite;
* Another doctor making the rounds that wants to see if my scar is healing;

and so on.

(I can't tell you how many people each day check my scar to see if it's healing correctly. I expect they'll be holding some sort of public symposium on it before long.)

These people tend to arrive at intervals ranging from 7-15 minutes apart from each other; before long, the 90-minute window of relatively pain-free sleep opportunity has closed, and now it's lather, rinse, repeat until the lights go out late at night, the hustle and bustle shuts down, there is a more definitive chance to get some real sleep... and I keep going wee-wee three times an hour through the night.

So. That having been said, as you can see, I'm really, really tired at this point -- but the fact is, until I get home, I'll just have to live with being really, really tired. And yes, I know it's all part of the process of getting better, but the simple act of sleeping is really integral to that process as well, and it's cruelly ironic that a hospital is one of the worst places for a sleep-deprived person to be.

Ah well. Like I said, everyone's got a role to play and I appreciate that. The people here have been good to me, and it's just another step in a long healing process -- and there'll still be a long ways to go on this journey once I get home. My parents had a consultation with Dr. Jacobs at Stanford yesterday to discuss the upcoming chemo plan, and we'll have a similar meeting with Dr. Checci here at Alta Bates probably sometime next week, since I'll likely be doing my chemo here. But mentally, that's not even on my radar at the moment; all I want to do for the next few days is just get some rest, if possible. If the pain comes back strong, we'll figure out a way to deal with it. Otherwise, I likely won't start chemo for a few weeks and therefore don't want to think much about it for the next several days.

You know, of course, that in the 30 minutes that it's taken me to write this post, not one person has come into my room. Let's see what happens once I log off and crawl back into bed!

I'll check in tomorrow once I'm back at the homestead and have caught up on some Z's. Until then, thanks as always for your never-ending love, prayers, thoughts and concern. Enjoy the rest of your Thursday and I'll talk atcha soon.

With much love,
Dino

TV Or Not TV

2008-06-23T12:14:00.000-07:00

And now, some thoughts on the amazing putridity that is TV.

Having spent close to three full weeks in the hospital over the past month, I've had ample opportunity to watch more than my fair share of television during this time. Frankly, there's not much else to do besides read, and I've done some of that as well, but since I've been on painkilling drugs that alter my lucidity much of the time, watching TV is the easiest and most brainless pastime there is at the moment.

Despite the presence of my 50" high-def TV at home, I actually don't watch that much TV in my free time (this whole hospital thing excluded, of course), so while I was vaguely aware of the pathetic state of the boob tube, I had no idea as to the extent of just how ridiculous the whole thing really is. From the programming to the commercials, it's hard to accurately summarize in words just how much complete crap there is on TV, but I'm in a saucy mood, so I'll give it a go.

First off, put yourself in my shoes for a moment. You're facing a life-threatening disease and while you have all confidence that you'll win the battle and enjoy a long and prosperous life, you need to always keep your mind focused on positive thoughts and concepts. Meanwhile, you're receiving a constant flow of painkilling drugs that slightly alters your perception of what you see and hear, amplifying the extremes of the emotional spectrum. Ergo, the highs get higher and the lows get lower, and anything with a negative connotation has a more severe effect than usual.

Now that you know a bit more about where I'm coming from, here's what I've learned by watching the 20ish available channels (ESPN not being among them) here at Alta Bates over the last three days, as well as the 25ish channels I had at Stanford before that:

* Over two million customers have switched their phone service to Vonage. I know this because a smug woman tells me so in the same commercial three times an hour, regardless of which channel I happen to be on. Discovery Channel, Food Network, whatever -- the same commercial airs all day, every day, everywhere.

* Apparently Hulk Hogan is really important at the moment, because every time I flipped through Headline News when I was at Stanford, he was on the TV. I have no idea why he's important because I refuse to stop and read the headlines regarding him, but from what I can gather, the world is revolving around Hulk Hogan at present time.

* I can't stop on CNN for too long because 90% of the stories deal with gas prices, the energy crisis, some sort of murder or death or mayhem, or other news that doesn't exactly feed a positive mindset.

* Invariably, network programming presents the same dilemma, unless I happen to stumble upon a comedy. I can't watch any drama shows because half the time there's someone getting killed or the story revolves around someone with a disease, and again, this is not the sort of stuff my mind needs to be focusing on at present time.

* I can always go to the History Channel for a little non-fiction fix, but last night they were running a series called Ice Road Truckers or some such thing. Are you kidding me? What happened to the "History" part of the "History Channel"? And why would I care about ice road truckers? What's next -- they gonna do a show about how deadly it is to fish in open waters?

* The TNTs, TBSs, and USAs of the world have completely given up when it comes to weekend programming. Yesterday I checked these networks several times over the course of the day and I kid you not, these channels were repeating the same movies all weekend. One of the channels showed Spider-Man on both Saturday and Sunday; another channel alternated between Iron Eagle and A Knight's Tale all day yesterday. So let me get this straight -- if I missed that all-important showing of Iron Eagle (a really crap movie from 1986, for what it's worth) at 11 AM, I can still catch repeats at 3 PM and 7 PM? Great, thanks a ton.

I mean, come on, at least try and mix things up a little, would ya?

* Along the same vein, last night A&E was alternating between hour-long blocks of The Two Coreys and Gene Simmons Family Jewels. Setting aside for a moment the fact that these two shows even exist in the first place, whatever happened to the network that brought us Biography? Now that was a show that was often worth watching.

* Apparently pharmaceutical companies have developed quick-and-easy solutions to just about every medical condition out there (except my own), because ads for drugs simply cannot be avoided. It's such a pleasure to be watching a comedy or something, have the show cut to an ad break, and hear a narrator say something like "If you have Type 2 diabetes, then we've got the answer for you..." or something similar. Makes it real easy for me to keep my mind off my own particular medical condition.

So, to sum up: I can't watch the news because it's too depressing, I can't watch network programming because it's too dramatic, I refuse to watch reality TV because it's all crap, and even the commercials are a detriment to my mindset. Therefore, I've been reduced to looking for Seinfeld reruns or even scraping the bottom of the barrel and watching old episodes of Home Improvement (a show that I used to enjoy back in the day, but can now watch for many consecutive hours without laughing once).

Ah well, thus endeth my rant. Thankfully my mom is dropping by to bring me my new Amazon Kindle, which a friend so graciously bought for me, so I'll give that a go and maybe try to do some more reading. I'm sure I'll do some more channel surfing this evening, but I've developed a pretty quick trigger finger for the on/off switch when I find there's nothing even remotely worth looking at (which is typically the case).

Still haven't talked to a doctor yet today, so I'm not sure of how long I'll be here, but as always, I'll keep y'all posted when I find out something new. I'm going to get up and walk around and get a little exercise now before the next pain shot arrives in a half-hour or so... and then maybe I'll look for a repeat of Friends to send me into a quick catnap.

With much love,
Dino

Lazy Sunday

2008-06-22T16:22:00.000-07:00

Hi all,

It's Sunday afternoon and I'm looking out at the Oakland hills from my hospital room at Alta Bates, awaiting a shot of dilaudid (a stronger form of Sister Mo) that will be coming my way in about 10 minutes.

I've been here since early Friday morning, when I went to the ER for pain control. The pain pills I had at home simply were not doing the job and I woke up just after midnight on Friday in pretty good pain. They checked me into the hospital in order to get me on a pain control protocol, so for the past three days, I've been on a combo of dilaudid shots, pills and now a patch attached to my skin that will gradually help get the pain under control in the next few days.

I'm not thrilled to be here, but aside from the absolute suckiness of the TV (unbelievably, they don't get ESPN, so I missed today's Italy-Spain soccer game -- although from everything I've read, I actually didn't miss much, as it was a dull game and Italy deserved to lose), things aren't that bad. I have my own room, the setup is reasonably comfortable, the view is nice, and most importantly, my stomach pain is being handled in a way that simply would be impossible if I was back at home. The fact is, the pain isn't excruciating, but it's bad enough that it needs more direct attention (as in, through direct injection) than I could get at home.

Also, while all my vitals are great, my white-cell count is running just a tad high, so they have me on antibiotics just in case I have a minor infection somewhere. From what I've been told, both the pain issue (obviously!) and the infection issue are not uncommon after major surgeries, so at the moment, the situation is not a cause for worry -- it's just an annoyance more than anything else.

So, it's been a long, lazy weekend and the doctors will re-assess my situation tomorrow. The initial guess from the on-call doc today was that it will be at least two or three days before I head home, so I can expect to be here until Tuesday if not later. If I was still sharing a room with someone at Stanford, this news would be very discouraging -- but the nurses here are far less intrusive (since they don't need to keep me under constant observation) and I'm not constantly being disturbed for pills and shots and other continual interruptions that keep a hospital patient from actually, you know, resting. Plus, the private room makes this stay a lot easier to bear, so I can deal with a few extra days in the hospital if it means keeping the pain to a minimum.

That's the scoop! I hope everyone had a great weekend and I'll check back tomorrow with the latest. Now it's time for another dilaudid shot and maybe a nap. Come to think of it, maybe this whole surgery thing ain't so bad after all...

With much love,
Dino

A Friday Bump in the Road

2008-06-20T16:42:00.000-07:00

Back in the hospital for Dino after a lousy night. Early this morning, his mother took him to the emergency room at Alta Bates in Oakland after he woke up (for the second night in a row) with a severe pain in his right side. They did a CT scan and blood test and, at the very least, want to keep him overnight. The blood work showed a minimal possibility of pancreatitis (for which they can give him an antibiotic, but they aren't doing so yet) and the scan showed a small amount of water on the outside of his right lung (typical of this type of surgery and possibly the cause of the pain).

At any rate, while he's not happy to be back in the hospital, he is happy that he's got Sister Mo again. His level of pain is more or less consistently around a "3", so it's not terribly elevated, but he told me he was frustrated, which we can all understand. He continues, of course, to keep the faith (hasn't let down one iota in that area), so let's see if this thing will settle down and we can get him back home tomorrow or Sunday. Can't tell if it's just a bump in the road - maybe this is a somewhat typical post-op response? As usual, we luv ya for all your good thoughts - our man is powering on.

Dick Scoppettone
(Dino's dad)

The Ultimate Weight-Loss Program

2008-06-18T13:50:00.001-07:00

Hi all,

It's Wednesday afternoon and I'm biding my time until I get to take my next painkiller pill. The pain isn't overly brutal but it's noticeable and unless I can find the right position in which to sit or lie down, it's constantly there. I get to take a pill every four hours and right now there's about 30 minutes to go before the next one might bring some relief for a while.

So I'm mostly settled in at home and mom is out running a few errands. I did get some sleep last night -- not the whole night by any stretch, but short patches here and there, and that whole process will get easier as time goes on. This morning, I washed my arms and legs -- there's still a lot of tape residue on my arms and my mom is going to grab some baby oil as suggested by Francesca in the comments to my last post -- washed my hair, brushed the teeth and shaved. Then I stood back for a good look in the mirror.

The face and body staring back are very unfamiliar. I've lost a ton of weight and my face is now very gaunt and (I never thought I would ever say this!) far too thin. Someone posted a picture of me on Facebook from when I wasn't too far from weighing 200 pounds and my face was really chubby, with chipmunk cheeks -- well, that was 40 pounds ago. My cheekbones really stand out now, and I almost feel like my eyes are bugging out of my head.

It's very odd to look at myself like this and I'm looking forward to the return of my appetite and the process of putting on some pounds (which are going to come right back off once chemo starts), but right now, I'm struggling to eat a lot of food. I know that this, too, shall pass, and once again the bells will ring in the town squares and the criers will joyously sing to the masses "Yea, verily, he returneth again to the Tacoe Belle for the fifth time this week!"

As for my body, well, it's a mess. Since reaching adulthood, I've gone through phases where I could reasonably be described as "stocky," "chubby," "packing a few extra pounds," and "boy howdy, try mixing in a salad every now and then, man!" Now? Now, I can actually feel the bones on my backside when I sit on anything that's not cushioned. Now, I can probably fit into a pair of size 30 jeans (although I won't be wearing jeans anytime soon -- it's pajama bottoms for me for the next week at least). Now, my arms look frail and my legs look thin.

Looking specifically at my stomach is probably the toughest thing for me to do without cringing. There's a huge blue scar that begins at my waist, runs vertically up through the belly button to the middle of my stomach, makes a 90-degree turn to the right side of my body, and then does another right-angle turn straight up to under my right armpit. Loretta wrote me that her and Tommy's boy T.L., who had open-heart surgery a few weeks ago, wants to compare his scar with mine; sorry, T.L., I think I'm winning this one in a walk.

I know that all this is going to get better and it's only a matter of time and rehabilitation; still, looking at the entire situation -- the sallow face, the frail body, the horribly-scarred stomach -- is still a bit shocking for me and I'm not entirely comfortable with it at the moment. That will come later, I know, and after the entire treatment regimen is over, I'll gain some permanent weight -- maybe not back to the 180s, hopefully, but I'll move out of the 150s. But that's down the line and right now, I just have to accept that it is what it is.

Anyway, that's the not-so-pretty update for today. Sorry to be so graphic, but this blog is all about the ups and downs of the entire journey, and while being home is a major "up," dealing with this incredible overnight bodily change is a huge "down" at the moment.

A few people have inquired about visiting and I would say that we should hold out until Friday and then see how I'm feeling. Right now I just need to rest, relax, and eat. Hopefully this weekend I'll have made enough progress to welcome a few visitors into the home; let's see how things go for the next 48 hours.

Okey doke -- it's almost time for the magic pain pill! Time to lie down in bed and let the rush of the pain medication sweep me into dreamland. As I get more energy in the next day, I expect to start responding to all the email messages you've all sent in the last two weeks, so you should be hearing from me directly in the next several days. Thanks again for all the great support...

And on that note, I will leave you with a very emotional moment I had today.

For the last two weeks I have been trapped in the hospital and in my own head, countless thoughts flowing through days and nights of a drug-induced and sleep-deprived groggy existence. Quite often during this period, I would find certain songs making their way into my brain and replaying over and over. One of these songs was a 30-second snippet of a new Coldplay tune, Viva La Vida, that plays on an over-exposed iTunes TV commercial. For two weeks, I often replayed that snippet in my head, even though I hadn't yet heard the full song.

Today a friend got me an iTunes gift certificate so I could download the latest Coldplay album, which was released yesterday. This morning, I downloaded the album, sat back, and clicked on the full track of the song Viva La Vida -- and as its pulsating, uplifting beat kicked in and I reflected on the entirety of my hospital stay, I began sobbing with tears of pain and joy and thankfulness and unbridled gratitude at the amazing group of family and friends I have around me, holding my hands and walking me down this road. My tears lasted the length of this amazingly beautiful song and when it was over, I felt a great sense of relief. I'm going to make it through this -- we all will.

Live the life, indeed.

With much love,
Dino

Viva La Vida

2008-06-17T17:18:00.000-07:00

What a glorious day. The Italians made it through to the knockout rounds of the European soccer tournament by beating France 2-0 (and all thanks to the Dutch, who beat Romania to uphold their end of the deal). Meanwhile, Coldplay released its new album today, and I'm anxious to go pick it up.

And, oh yeah -- I'm home.

All the tubes, wires and IVs are out of my body. There's just a couple bandages remaining, and those I can take off in a day or two. Now, I really need to wash my hair and get all the tape and bandage residue off both my arms -- I'll get to that later this evening. For the moment, I'm relaxing in relative peace and quiet. It's a bit of a system shock, to be honest, after 13 days of the unending hustle and bustle of the hospital.

It's great to be home. I'll write more tomorrow when I'm more settled. Until then, Viva La Vida, Forza Azzurri, and all that good stuff.

With much love,
Dino

A Week Later

2008-06-16T18:02:00.003-07:00

Hi all,

It's now been a week since the surgery, and I've just had my best day yet. The pain is reasonably under control most of the time, my bodily functions appear to be returning to normal (although I'm having to pull a #1 all the time, which is completely normal, as my body is purging fluids that had built up through all the IV activity), and while I'm still tired, I think that's more a function of being in a hospital.

This morning, they started me on a solid diet. No chalupas just yet, but I've picked my way through a couple meals so far as I begin to build up an appetite.

And then, this afternoon, my docs made the rounds, considered my progress, and said that there's a good chance I can go home tomorrow.

Ultimately, I would guess that unless there's a deal-breaker (some sort of random fever or infection or other bodily issue that's askew), I'll be heading back up to the Oaktown tomorrow afternoon -- not a moment too soon.

I'm going to try to not get too excited for now, but if this is my last night down here (at least until chemo starts), then I'm all for it. I got a lot of sleep last night as I had no roommate for the evening, but they moved someone else in as my neighbor this afternoon and while he doesn't sound very vocal or in too much pain (so far), the comfort of my own room, own bed and an 8-hour night of uninterrupted sleep is at the fore of my mind.

So -- that's the latest. I'm gonna head back now, eat dinner and watch some TV. I'll let you know if tomorrow is indeed check-out day as soon as I know -- although given the speed at which some things move around here in terms of admissions and discharges, I could very well be at my home computer before getting the chance to update the blog.

I hope everyone is well and send your positive thoughts and prayers that tonight is indeed my last night in the hospital!

With much love,
Dino

Happy Father's Day!

2008-06-15T11:33:00.000-07:00

Hi all,

I just meandered down to the computers from my room. About an hour ago, they capped my IV (while still leaving it in my arm in order to dispense various medications), which means I don't have to drag the big IV module around with me everywhere. This means that I'm a lot more mobile now, which is good, because my bodily functions are waking back up and challenging me to get to certain places (like the restroom) within a certain amount of time. This is what we call the "not fun part of recovery."

Actually, pretty much the whole shebang falls under the "not fun part of recovery" header, but I'll get more into depth on that whole thing as more of my energy returns. In fact, if I find something that could be described as "the fun part of recovery," I'll let you know immediately. Don't hold your breath waiting for that, though.

Sadly, the fact that I no longer have my trusty IV module to dispense fluids and meds means that I have to bid adieu to my constant companion, Sister Mo. If my pain gets bad enough, they can still dispense the Good Sister directly into my IV (like they did during the first day of my hospitalization, pre-surgery), but the wonderful 'pain button' and the instant dispensation of medication is gone. I'll be on pills moving forward unless there is an acute attack of pain. Or unless I fake an acute attack of pain... not that I would do that.

Blessedly, things really aren't that bad. Yes, there is a constant dull pain in my stomach where the surgery was, but many times, I find myself feeling only a minimal amount of discomfort. Any physical activity exacerbates the issue, but I'll just have to deal with that moving forward as part of my physical rehab. Otherwise, my body is beginning to feel more and more 'normal' as it takes less and less effort to do the things we always take for granted (getting into and out of bed, moving around in bed, walking, sitting up, etc.). Still a long ways to go, but there's a marked difference between today and, say, Wednesday.

The schedule is light today and I'm going to spend most of the day resting. It's Father's Day and I want to send a Happy Father's Day wish to all the dads out there, especially my own pops, who is playing golf with my brother Nick today. I hope everyone is able to enjoy the balance of the weekend and get out into the nice weather; I had a couple visitors yesterday and they wheeled me out into the sun for a little while as we sat in a garden courtyard here and chatted for a spell. First time I've been outside since the surgery, and it felt great.

I have no timetable on when I will be released but based on the speed at which they keep removing various tubes and wires, and changing the aspects of my diet, I would guess Wednesday or even Tuesday might be about right. I could be way off on that, but pretty soon they won't have too much reason to keep me around here any longer. I'm really looking forward to getting home and sleeping a full night in my own bed without the constant distractions that happen in a hospital. My roommate, a fellow coming off a kidney transfer in his own battle against cancer, is checking out today; I wish him the very best, but his departure should provide some much-needed peace and quiet, as he's had some very loud physical and bodily struggles from his side of the curtain. Of course, this could be a double-edged sword and they could check someone else that's louder into the room right away -- I guess we'll see. Not gonna worry about it.

Okay, I'm headed back to bed for a while. Thanks again for all the messages and support; it's getting me through all the rough patches and pretty quickly here, this hospital visit will be a thing of the past. Enjoy the rest of the weekend and I'll check back atcha tomorrow, assuming I have the time...

With much love as always,
Dino

Allow Myself...

2008-06-13T18:58:00.000-07:00

to introduce... myself.

Dino here, writing from the cyber cafe around the corner from my block of rooms. It took me seven minutes to walk here when it would take a healthy person about 25 seconds, but I did so by myself, and that's a huge victory.

My dad is correct in his previous post -- most of the big painful tubes are now gone, and I'm left with one stomach filter type of thing, and an IV drip in my arm. On Tuesday (which seems like yesterday) I was a complete mess, tubes everywhere, but the nose breathing tube and the neck IV came out yesterday, and the chest tube and catheter were removed this morning. It was a mixture of both pain and relief to get those out. I'm much more mobile now, at the very least.

My two loving parents have been coming up each day and have noted the progress from Tuesday morning's horrific Hopalong Cassidy's Cavalcade O' Tubes to today's "Hey, he looks pretty close to normal, albeit 30 pounds lighter!" Although of course this afternoon my mom commented that part of my stomach had still retained a little chub, so maybe it wasn't all Kuato's doing.

I'm marking my progress incrementally and although there has been, and will still be, a lot of pain in the rehab process, each day is better than the last. My folks print out all the blog comments and I continue to get every text, voicemail, comment, email, etc. from my amazing group of support. Your continual positive push is keeping me ahead of schedule on my rehab, I truly believe that. The doctors are constantly reinforcing that I'm young and healthy, and I am definitely ahead of track on when tubes normally should be removed, food re-implemented, etc.

There have been several queries about visiting and as my dad noted, as much as I'd love to see each and every one of you, this weekend is probably going to be pretty light with family only. I expect that next week it will become easier for me to say yes to any requests to come down to Stanford to visit.

Dr. Jacobs came by with the path notes this evening. She said the tumor board has determined that my cancer is very likely a lipo-sarcoma, and the next phase of my treatment will be chemotherapy in a few weeks. Right now the remaining cancer is quite small but it's in several places and if Kuato taught us anything before we nailed his ass to the wall, it's that it can grow reasonably quickly. So, we'll do chemo for a few months, but I expect to crush this bad boy with the chemo treatment and if it comes back later, I'll crush it again. Whatever it takes. Most importantly, the vast bulk of cancer is now out of my body. That gives me an incredible feeling of survival and I will continue to survive.

Dad was right -- I spent much of the day sleeping. I'm finally able to sleep for long periods (although anyone that has ever spent time in a hospital will tell you that you can do pretty much anything in a hospital except sleep) and frankly, I'm exhausted. Probably will sleep more tomorrow and Sunday, but I'll begin with a liquid diet tomorrow and my already-requested Chalupa Protocol by next week (hopefully quicker than that, but it could be later, you never know).

That's enough of my blather. Thanks to all of you for faithfully following along and I (and dad) will continue to post updates when we can. Now get out there and enjoy the weekend sunshine. Summer is here for all of us!

With much love,
Dino

The Sleeper

2008-06-13T17:49:00.000-07:00

What a pleasant surprise to walk in this morning and find Dino, sans tubes, sitting up in a chair watching the U.S. Open. They've pretty much removed all evidence of hospital-type hookups except for the standard drip line. He had been up walking earlier and now was talking in sentences (though not long-winded). So, what a difference a day makes.

Nothing new on the biopsy results front - Dr. Jacobs had not come in by the time I left, so probably Monday. What's the rush anyway? He's finally starting to look normal. As we watched Tiger move through the front nine, I glanced over and he was out like a light, mouth wide open, having the best sleep of his life. I actually haven't seen him fully asleep in over two weeks - so, as we cruise into the weekend, life is good for all of us and we hope for you too.

Dick Scoppettone
(Dino's dad)

A Breath of Fresh Air

2008-06-12T19:43:00.000-07:00

Today, some improvement. He got the tubes out of his nose and the main lines removed from his neck - and he actually got up and sat in a chair for a bit. So there's progress, albeit in tiny steps. You and I already know this is to be expected - my guess is that we're at least five to seven days away from being able to announce, "Heeeeere's Dino!"

He's still communicating in one-word sentences, pretty much a whisper, and Mary and I have yet to totally understand his whacky sign language. Nonetheless, I was really beginning to feel like the indispensible Dad today when he interrupted my reading with a forced "Dah . . . Dah". I jumped from my seat, instantly available, ready to serve. As I pressed close to his mouth, it wasn't "D a a a a d" that he was whispering, it was . . . fan. He just wanted the fan turned more toward his feet. So much for dear old Dad coming to the rescue. You have to laugh.

We're hoping for some biopsy results tomorrow so Dr. Jacobs can determine the next course of action, probably chemo. And I asked Dino about visitors for this weekend. He said no. Even with his level of pain, he's still making the right calls. So stay tuned - our man is climbing the mountain again, and it won't be long.

Dick Scoppettone
(Dino's dad)

Slow Day In Paradise

2008-06-11T16:56:00.000-07:00

They moved Dino from ICU back to a regular room around noon today and I think they may have him on something other than morphine because he seemed somewhat woozy. His pain has dropped a bit (yesterday 7, today 5-6), but today was the doldrums - slow, not much in the way of anxiety, more like "when is this all going to be over?"

Dr. Norton was in early this morning (no new news) just checking on his patient. I don't think Dean's quite ready to be pecking away at his own blog yet. Maybe by Friday, maybe the weekend. Mary printed the last several days worth of blogs and comments for him which he read and said, "Tell everyone thanks and I love 'em." So - another day in the slow evolution of recovery; some days are diamonds, some days are stone. BUT WE'RE GETTING THERE!

Dick Scoppettone
(Dino's dad)

Tuesday With Dino

2008-06-10T14:51:00.000-07:00

Dino is awake and talking, though ever so quietly. The expected contingent of tubes and wires and blinking monitors is there, but not in a scary way. The ICU is pleasantly calm and his nurses are totally tuned in to him. The pain? He says it's about a 7 and he has his trusty Sister Mo button pusher, now set to activate every ten minutes. So the recovery begins.

We caught his surgeon, Dr. Norton out in the hall and he expanded on what he had told us yesterday. They got all of the tumor, but there are a number of small spots that have metasasized - to what extent we don't know. The doctor reiterated that chemotherapy is the next order of business, but that won't begin until he's healed from the surgery. We do know that the surgeon also removed a small portion of his liver, his right adrenals and right kidney, and a portion of his right colon (though there is no need for a colostomy). Dr. Norton was actually upbeat about the limited reduction of these organs, saying that it would not materially affect his lifestyle.

Once Dino is readmitted to a regular hospital room, probably tomorrow, we should be hearing more from Dr. Jacobs (who will be supervising the chemotherapy treatment) as to the overall plan. Are we out of the woods yet? I think so, but I can't say for sure - mainly because we haven't gotten all the facts from all the players. As much as we want to seek out every answer from every doctor, that's not the format this story is following. Dino hasn't lost his positive posture, nor have we. But we're in a slightly different mode at the moment here in the ICU and this is more of a time of peace and comfort and - trust.

I must tell you something. Several weeks ago, when we first came to Stanford and were so thoroughly energized by their immediate "take charge" response, I had a bit of a unique revelation (and these things rarely come to me). We had been hearing from so many people who were focusing on Dino, so many prayer groups who had ramped up the troops, so much thought energy circling around my son. We were in a small side room massaging each other's emotions about how lucky we were to be here. Then Dr. Jacobs entered. As she began speaking, her words had such a soft and deep power that the room was for but a second filled with the light of all of Dino's friends.

I know that sounds a little "woo-woo", but I'm not a religious man (probably more like most of you, a little spiritually inclined). Fast forward to about 30 minutes ago, when sitting in the ICU waiting room, I thought I'd better get another blog out. I grabbed my notes folder and was about to head down several floors to the computer room when I heard singing. From directly around the corner. Girls voices almost sublimely harmonizing in a choir-like tune unfamiliar to me - echoing softly down the hall. They must have been with a family across from us in the room because I could see Mom and Dad's faces in a smile. Again, the light, almost like a tractor beam. We know you're here - your love's coming through loud and clear - and sweet.

Dick Scoppettone
(Dino's dad)

"Aw Kuato, ya won't see him no more."

2008-06-09T17:45:00.000-07:00

It's Mon., 5:50PM, and we just talked to Dino's surgeon, Dr. Norton. Kuato is now history (all 30 pounds of him!) Dino went in at 10:30AM this morning so the whole surgery took about 7 hours. We won't be able to see him tonight - the doctor said he'll probably be out for at least 24 hours.

I don't have a lot of specific info because we only had a short visit with the surgeon. By tomorrow morning, I assume that we will have talked to Dr. Charlotte Jacobs, the oncologist who is overseeing this whole thing. Suffice it to say, we all just exhaled - and life at this moment is very good. I promise that by tomorrow I'll have plenty of info for all of you wonderful friends. As soon as I hear it, I'll pass it on to you. The only specifics right now are that, while they got all of the tumor, there were several areas that will require chemo because they didn't want to radiate them. My sense is that Dino is out of rough water and on his way to a healthy recovery.

So - let's regroup tomorrow. Until then, we love each and every one of you.

Dick Scoppettone
(Dino's dad)

Quick And Painless...

2008-06-08T13:01:00.000-07:00

...would definitely not be a phrase used to discuss my stay in the hospital thus far, but it describes this post pretty accurately: my chest CAT scan came up clear this morning so we're good to go for a Monday surgery, assuming there are no last-minute developments in scheduling or medical issues. If something arises, we'll get switched again, but it's looking hopeful.

This will probably be my last blog post before surgery, so please keep all the prayers, love and positive thoughts focused in my direction tomorrow, and my dad will update the blog once I'm off the table and into Intensive Care.

My love to all of you. We're gonna get this thing gone!

Dino

Friday Afternoon...

2008-06-06T15:26:00.000-07:00

Hi all,

Not much more to update but since I've been moved to a new room right down the hall from the computer room, and since I need the exercise, I thought I'd post a quick note.

Finding a comfortable position in which to sit/lie down is next to impossible but this, too, shall pass. Other than the huge lump in my belly -- which, to be fair, is causing a few problems -- everything else feels pretty good. I have a lot more energy this afternoon than I did during my update this morning and I know that while the next two-plus days are going to take a while, I'll get through it. My big Sister Mo is here to help see to that! :)

So, just a short note letting you know that I'm doing fine. For the umpteenth time, I am still reading my emails and texts, and getting all my phone messages. Your constant love and support is such a major aspect of this fight and I can't tell you enough how much it means to me. As always, just know that if I don't get back to you, it doesn't mean I didn't get the message. I'm gonna guess that it could be two-three weeks before I can even begin to touch base with everyone that has contacted me during this time. I've received like 20+ texts in the last 24 hours alone, which officially makes me the most popular person writing for this blog.

The weather's gonna be great, so enjoy the weekend! I'll try to write more when I have the chance, but please don't assume anything if you don't see any updates. Have fun in the sun, and let's get ready for Monday!

With much love as always,
Dino

From The Computer Room

2008-06-06T06:26:00.000-07:00

Hi all,

Dino here. It's almost 6:30 AM and I've been up for an hour after actually getting 4-5 hours worth of sleep (more than in any of the past 3 nights).

Tough to type as I have an electrode sensor attached to my left index finger, but I'll deal for a moment.

I have read all your comments and got all your emails and calls and texts. Thanks again for being such an amazing support system. Kuato has three (interminably long) days left in his ugly and thankfully short existence and like you, I will be counting the hours (literally) until Monday morning.

I have actually gone the last 10 hours without a shot of morphine (or Sister Mo, as I prefer to call it) and did okay in the sleep department, although my stomach is pretty huge, distended and painful. Save the jokes about how "it's always been that way!" -- this is really a different story. I can't wait to get this cancer out of me... now it's just biding time and managing pain until Monday morning.

Rest assured I will get back on the morphine train shortly -- I just want to try to keep the urge for constant self-medication under control so that it doesn't get out of hand by Sunday night. Also, I'm finding that while it's really easy to 'space out' on the Sister Mo, it's hard for me to actually sleep when I'm riding that wave. Thus, no morphine over last night.

Anyway -- I know that some of you will be interested in calling and/or visiting over the weekend, and while I thank you for that, I should tell you that you should probably wait until the surgery is over before you come by. My stomach and breathing pain is such that I can't talk much and I spend most of my time conserving my energy, just trying to get comfortable. So, the visitors that I will have this weekend (mostly family) already know that I won't be real good company. My suggestion to the rest of y'alls is to hold off until Wednesday or later, when I am in recovery, before coming to visit if possible.

Well, it took a good bit of effort to walk down to this computer room, so I don't know whether or not I'll come back in the next 3 days to post another update. Please know that I am feeling everyone's thoughts and prayers loud and clear, we're in the hands of amazing experts here, and we're gonna beat this thing, no matter how long it takes.

My dad will continue to post updates as needed, so as always, this is the best place to come for all your Dino informational needs!

With much love to everyone,
Dino

SURGERY OFF UNTIL MONDAY

2008-06-05T20:41:00.000-07:00

Dino's medical team decided today that since there is no pending emergency, Monday is the best day for surgery. By late this afternoon, the lead surgeon, Dr. Norton had already performed four surgeries, and with an eye to having the team totally alert and fully prepared, Monday got the nod. This also will allow Dr. Norton to have his top people available.

For most of the day, there was a mini-crowd gathered in Dino's room (his mom, Mary, my wife, MiMi, his brothers Nick and Amber and Chris and Virginia, his Aunt Anita, and a very special friend, Dr. Lou Zwerling who made the call that got Dino into Stanford). When our man, waiting all day on an empty stomach, was notified of the postponement, he was also cleared of any dietary restrictions and din-din quickly became the priority topic.

I expect he'll entertain visitors this weekend, but since they armed him with a morphine pump, callers and drop-ins can probably expect an affable stare, but certainly no tap dancing or hospital bed races. I found a computer room he can use - whether he'll be up for resuming his blog right now, I don't know. I'm just a messenger - we'd all rather have our leader speaking to us again.

And, as has been the case all along, your vibes are coming through loud and clear. Thankyou, thankyou, thankyou. For today . . .

Dick Scoppettone
(Dino's dad)

SURGERY THURSDAY???

2008-06-04T21:49:00.000-07:00

Well, we made it to Stanford. Dino is in and settled after being admitted this afternoon. Along with a welcome dose of morphine, he got the necessary cat scan we've all been waiting for, and though it hadn't been fully reviewed by the time we left the hospital this evening, it's possible he could be scheduled for surgery tomorrow (Thursday).

We know the surgery is major (probably eight hours with prep) and because Stanford is so wonderfully thorough, they're trying to determine if they want a separate vascular team available (and said team may already be booked for another patient tomorrow). So, if not tomorrow, possibly Friday, but at least Dino is now safe and secure in the hospital that he (and all of us) wanted. And his pain is being effectively managed.

I'll keep this short, first because this is Dino's blog and I want the master back in front of his keyboard ASAP, and second because it's late and tomorrow may be a very long day. I'll keep you posted every step of the way (that is, as soon as I can get to a computer, probably in the evenings). The assistant to Dr. Norton (Dino's surgeon) says we can probably expect about a five-day stay so let's wrap it up for tonight by saying that Dino is, as usual, leading the charge. He's very up, very positive, is looking really well (except for the Kuato bulge) and feels the wonder of all your good thoughts coming his way. We all love you. Until tomorrow . . .

Dick Scoppettone
(Dino's dad)

To The Hospital

2008-06-04T09:59:00.001-07:00

Hi folks,

After spending far, FAR too long haggling with the insurance company and the medical group, I'm headed to the Stanford ER this morning to check myself in (with the assistance of my parents) so we can get surgery done as soon as possible.

I don't know how long I'll be down at Stanford but please direct all your positive prayer and energy in that direction. I'll let everyone know when I'm out of the hospital and back home (or at one of my parents' homes).

There have been many kind offers of help and I thank you all for that. Stanford care cannot be covered by my HMO insurance -- for some reason it took the medical group several business days to impart that bottom line to me -- but we'll figure out the expense situation later.

In the meantime, the only focus is to get tested, operated upon, and set up a treatment protocol with the experts at Stanford so I can get most of this cancer removed quickly and figure out how they can attack the remainder of it.

It's going to be complicated but with the experts running the show, and everyone else providing many different forms of support, I'm nothing short of 100% confident that I will beat this thing.

That's all for now. Next update will come when I'm out of surgery and sober enough to write. Until then, good health to all of you and keep the positive thoughts and prayers flowing my way!

With much love,
Dino

A Hard Day's Night

2008-06-03T08:26:00.000-07:00

Hi fellow readers -- I'm gonna let you know up front that this one's not gonna be all roses and chocolates.

First things first: we're making progress on the insurance angle and the nurse advocate for us has given us a couple options to work with here. Apparently the main sticking point (and this sure would have been nice to know oh, say, a week ago or something) is that Alta Bates simply cannot refer people to Stanford. It's not in their network; they have no connection. There are no ties there. They simply would never have referred me there for any sort of second opinion. The nurse advocate, a very nice woman named Barbara, is working hard to find compromise solutions here and we expect more phone calls, referrals and movement to happen this morning, once she gets in the office around 9.

(I cannot believe how long this is taking me to type, but I'm coming off 3 MG of Xanax. More on that in a moment. I'm hitting backspace and correcting my spelling literally once every 2-3 seconds.)

She's basically suggested two options: one, let the Alta Bates docs make a self-assessment on whether they can handle my case and if they can't, they'll refer me to UCSF, which is a very fine cancer facility in its own right. I'm okay with that, so long as the UCSF referral, consultation and treatment don't take too long.

Two, we try mid-stream here to change my medical group from Alta Bates to one that DOES have ties with Stanford. Barbara will be calling this morning to discuss the viability of this. If it can happen, then I'll get a new GP with the new group who will refer me directly to Stanford, and we eliminate most of the rest of the hoops and get this thing going.

So, we'll find out this morning which direction we'll go.

In the meantime, my pain is growing. This morning I'm feeling okay at best, but that probably is more attributable to the huge dose of Xanax I took last night just to get to sleep. There are very few positions left on the couch that are comfortable for me. I fell asleep sitting up and eventually migrated to my side, but sleep was more drug-induced, and there is currently a shooting pain in my side if I breathe too deeply (as in, more than halfway in). My waist and back also hurt intermittently.

So like I said, it's not all roses and chocolates. I don't feel like my body in its entirety is breaking down or anything -- the functions all still feel pretty good -- but the tumor has either grown or shifted (or maybe both) and is definitely impacting my right lung now too. That doesn't mean that it's in the lung, but more likely has grown/shifted to the point where it's pressing up against it and causing breathing pain.

The vicodin really isn't working, Advil isn't working, Tylenol isn't working -- this is all internal pain coming from a moving of organs and the presence of a massive tumor that shouldn't be there. Not sure which pain medication actually WOULD have an effect here, but if you know of one, please suggest it.

Dad is on the phone with various people and is also discussing checking me into a hospital to manage the pain while we await the various insurance milestones. I don't know if that's going to happen or not; we'll see how things feel as the day progresses. If the pain subsides a bit, I can manage it from here at home until we're ready to test and go into surgery (assuming that happens within the span of a few days, and not weeks); if it continues along the lines of last night, then maybe I will have to go to the hospital or at the very least receive some stronger medication that will manage the pain and help me sleep.

This is not the most positive of blog postings but please realize that despite the recent travails -- which have been the worst so far but could still get a lot worse over the course of treatment -- my mindset has not wavered at all. I'm still 100% positive I'm going beat this thing and I know all of you are as well. It's harder to have faith when it's 2 AM and you're in considerable pain, but I know things could (and probably will) even get worse from here before they get better. It's all part of the journey and whatever I have to do to get better, I will. I implore all of you to continue to have faith in that.

And if last night was just a bad bump in the road, maybe I'll be sticking around the homestead longer than expected; we'll make any sort of short-term hospital or pain medication decisions later today after assessing how I'm feeling. Since this all started, the pain has been inconsistent and intermittent and maybe today will be much better than yesterday.

One last note: my dad now has my blog password and if the gears jump into sudden action such that testing and treatment begin immediately, or I end up in a hospital bed for a couple days to await treatment, he'll keep you posted. So, don't expect the news to dry up if I exit the communication loop for a few days, but I also encourage to continue the phone trees and email lists to get out the latest and necessary information so that all my extended family (which is what all of you are) can know the latest.

Let's see how today goes, what sort of news we get, and how my body feels, and if I'm up for it, I'll post again tonight with more. Again, my love and thanks to all of you for your various parts to play in this journey, and together we'll reach the end of this road and it will be a great thing. The road is going to have some potholes (like last night), but the ultimate destination is going to be worth it.

With much love,
Dino

Monday, Monday

2008-06-02T11:00:00.000-07:00

The weekend has come and gone without any news on the medical or insurance front, which is to be expected. I don't work Saturdays, many of you don't work Saturdays, and most doctors don't work Saturdays -- nor do Alta Bates administrators who need to make final decisions about how to handle the treatment of their patients who have life-threatening illnesses.

Everybody's got to have a couple days at the end of the week to relax, maybe play some golf, or watch an inordinate amount of crap reality programming on TV, like Celebrity Circus Axe Men In Alaska Who Are Really Tough While Simultaneously Dancing And Forgetting The Lyrics To Songs About Dangerous Fishing Situations. Fine.

Friday, we had a nice visit with Kevin, the assistant to my GP, Dr. Stewart. Kevin has been handling all the paperwork on my case and routing it to the right people within the Alta Bates network, and he's spent untold hours dealing with the bureaucracy of my situation. He's very warm, patient and understanding, and has been a real trooper in all this -- I'm not quite sure how to express the extent of my gratitude but when this is all over, we'll figure something out.

Later on Friday afternoon, we found out that all the paperwork had finally made its way to the managing director of the Alta Bates Medical Group so that he or she could give a final answer regarding who is going to take on (and pay for) my treatment. I got a call from Barbara, the nurse advocate who is on my side in this battle, and she took me through the possibile outcomes.
First, she explained that I have a couple of strikes against me in our request for Stanford treatment:

To begin with, Alta Bates is not connected to Stanford in any way, and had I asked for a second opinion within the network as per their proper protocol, they would have sent me to one of two other places; one was UCSF (a very fine cancer center in its own right), and I don't remember the other. So, in their eyes, Stanford should not even really be part of the equation in the first place.
Perhaps more damaging, though, was that I circumvented their "second opinion process" by getting my own second opinion at Stanford, as arranged privately by Lou. This is a big no-no in the eyes of the medical group and if we know anything about medical insurance, it's that they will fight everything to the hilt if it means paying extra money. The fact that I didn't follow their rules is a big hindrance to my request.

If there's a "plus" side to my request, it's that I likely have a lipo-sarcoma of the stomach. I'll spare you the math, but the rarity of this disease means that the Alta Bates physicians see these exact types of cases a few times a year at most. That's being generous, I think. Stanford sees these types of cases all the time; there's probably very little about my own particular tumor that will be new to them.

I don't know if that's going to make a difference to the administrator (who is a practicing, expert oncologist) as he or she makes the decision on how to handle the treatment. There are pretty much three ways this could go:

I could get a full thumbs-up for all treatment and testing at Stanford. I'm not expecting this to be the outcome.
I could get a compromise, in which they agree to pay for consultation and surgery at Stanford, while all testing and radiation treatment would happen in-house at Alta Bates. Assuming Dr. Jacobs from Stanford is quarterbacking the team and Dr. Norton from Stanford is the surgeon, I'm totally fine with this. It's really immaterial where I get my hi-def CT scans -- I just need to get them NOW, not in another week or two. I also think there's a decent possibility that this may be the administrator's actual decision.
I could get a thumbs-down on everything, wherein they tell me that they can handle every single aspect of the treatment, from testing to surgery to radiation.

If that last option is the Alta Bates decision, then we have a whole new set of hurdles to jump through while we escalate the case to the Blue Cross HMO level, but at the very least, I will begin testing as soon as humanly possible this week so that we can prep for the next (first!) stage of my treatment. No more dawdling, no more waiting for administrators, no more twiddling my thumbs while the bean-counters request documentation. It's all been delivered and collated, so it's time for them to act.

Last week was a week of relative inactivity; seeing friends, relaxing on the couch, reading, so on and so forth. And waiting, lots of waiting. Okay, fine, been there done that -- now we have to act. Kuato is not getting any smaller and in fact shifted at some point yesterday to reside right down just above my waist, and it's causing me more pain than it has before. I'm not immobile by any stretch, but the couch is the most comfortable place to be and that's only going to become more and more true until we get this ugly thing removed. At night, I've taken to falling asleep on the couch in an upright position, and then when I inevitably wake up at 2 or 3 or 4 AM, I drag my half-asleep body upstairs to my bed and spend the last few hours of the morning catching sleep in small bunches while laying on my side.

I'm gonna run off and get lunch now; we've made a couple phone calls this morning trying to track down the key players and no one's yet gotten back to us, so... the waiting continues, but I'm trying hard to not let it get me down.

I just got a voicemail from Kim indicating that some of you regular readers are concerned that my lack of posting over the weekend has indicated a turn for the worst, either in my mental or physical health. As always, I dearly appreciate the concern and the answer is no on both counts -- basically, I just didn't have the creative energy or inspiration to fire up the blog and throw up some thoughts. That will happen from time to time, so please don't read anything into the occasional lapses of inactivity. It might be a different story once treatment starts, but until then, I'll be here fairly regularly, keeping you up-to-date on the latest steps on my journey.

Finally, a few of you were a bit confused about Thursday's post -- if there are still any lingering questions about what I was talking about, please refer them to a Ms. Rosie Palm, care of The Sperm Bank of California, and she can clear things up for you.

Hoping to get some sort of answers today and if we get them, I'll let you know!

With much love,
Dino

The Right Stuff

2008-05-29T15:43:00.000-07:00

What do you want first, the good news or the bad news?

Okay, fine, the bad: No progress today on the insurance front, although we seem to be getting closer. Kevin, the assistant at my GP's office, continues to try to connect the insurance dots so we can officially use Stanford for the entire run of my care, but naturally it's not easy. The insurance company needs a reason (me having a rare cancer is just not reason enough) why we can't handle everything at Alta Bates, and until we can identify the right person in the network, convince him/her that my form of cancer is rare and needs to be treated by qualified specialists, and provide all the necessary documentation, this fight is going to drag.

Sure, I'm frustrated, and so are all my family and friends, but it's part of the process, and we'll get there -- I'm confident of that. On the home front, Dad has relieved Mom for a couple days so she can go back to Santa Cruz, take care of some stuff at her home, rest up and hopefully relax. (I know this will be difficult for her, but I also know she's reading this, so Mom -- relax. Please.)

But here's the good news: I had a date today. And though initially it was like pulling (teeth), in the end, everything went swimmingly.

Here's the scene:

I woke up in a giddy mood, ready for the occasion. After a shower and a thorough brushing of teeth and shaving of face, I donned my best gear: my nicest jeans, some dressy shoes, and my finest tee-shirt, the blue one that helps bring out my eye color. We're talking 100% class here. After spritzing myself with just a drop of Drakkar Noir to add that hip, seductive scent, I got in the car and drove to meet my date.

I made it to the cafe (which others might refer to as a 'bank', but I prefer 'cafe') well ahead of time and before my date began, I got some advice from a certified dating expert who had me sign some papers that basically indemnified herself and her associates should the date end up going awry. "We can't be held responsible if you screw things up," I was told, but I wasn't too worried about that -- I wasn't there to screw things up, was I?

I signed on the bottom line, got some final advice, and then I was ushered into a special room for the date.

Once inside, I found that my date was in there waiting for me. I shut the door for some privacy, and endured a bit of an awkward silence before making the first move.

"You look familiar," I said.

"So do you," was the response.

"Weird coincidence," I mused.

"Yep."

Okay, not a great start, but not a totally bad one, either. My date sniffed and waited for me to say something else.

"Um... so... how are things going with you?" I asked.

"Well, I have cancer," came the blunt reply. Wow -- talk about a conversation-killer. More dead air, an uncomfortable shifting of feet, eyes looking everywhere around the room except for at each other.

Time for a new tactic: current events. "So hey, how about that whole thing in Burma? Was that crazy or what?" I threw out.

"Terrible tragedy," was the response. "I suppose you're going to bring up the earthquake in China now too, aren't you?"

Strike two. Man, this was not going well at all. One of us coughed, I'm not sure who. You could hear the clock ticking on the wall, and that wasn't a good thing; my date had made it clear that we only had a half-hour to spend together, and time was bleeding away.

Maybe entertainment was the path here: "Your thoughts on Simon Cowell?" I offered.

"A worthless, pompous ass."

Bingo! Now we were getting somewhere; now we had some common ground. This was clearly the road to take, so I continued: "Natalie Portman or Keira Knightly?"

"Portman, no contest."

"Hey, me too!" I exclaimed. Maybe we had more in common that I thought. I continued along this vein, asking questions, gauging answers, and realized that contrary to my initial impression, we were two peas in a pod. Every response I kept getting was perfectly in line with my own.

I sniffed the air; it could have been me that I was smelling, but I had to ask, so...

"Is that Drakkar you're wearing?"

"Hells yeah it is!" was the response, and my heart leapt.

This was almost too much of a coincidence. People talk about love at first sight, but this was something different entirely. Brimming with confidence, I went with the trump card: the one question that has sent so many previous dates scurrying to the waitress to get the check immediately, before they give me some flimsy excuse about needing to spend time with their dying marmot and then bolt the restaurant before I can even ask them to sleep with me. Nervous as hell, I took a deep breath, looked my date in the eye, and just put it bluntly.

"What do you think of Star Wars?"

"Star Wars is hella cool!"

That was it; that was the clincher. You could probably hear my sigh of relief in the ~~lab office~~ cafe kitchen. This was meant to be; we were definitely made for each other.

We got into an in-depth discussion about how the original Star Wars trilogy stacked up against the Indiana Jones trilogy, and how those stacked up against the Back To The Future trilogy, and whether Lord Of The Rings trumped all. We were just discussing the relative merits of Frodo versus Marty McFly when I checked the clock: we only had 90 seconds left in our date. I had to act fast.

"Would you care to shag, baby?" I asked in my best Austin Powers impression, and swept away in the romantic nature of the question, my date immediately agreed. We got down to business, and I'll spare you the details, but it was nothing short of amazing. In fact, I felt like I had done it a million times before.

Before I knew it, my time was up, and I said goodbye to my date -- for now. My heart told me that I'll probably see this person again sometime soon, so I headed for the cafe exit, handed the waitress a nice tip on my way out, and left with a smile.

So that's how my date went. Like I said, it was the good news of the day. Sorry if it feels a bit anti-climactic after all the build-up, but then, I never was any good at writing romance.

With much (self-)love,
Dino

Insurance, Insurance ... Pay Me!

2008-05-28T09:40:00.000-07:00

A Mr. Richard Feder from Fort Lee, New Jersey writes in and asks, "Dear Roseanne Roseannadanna -- it's now Wednesday morning. How was yesterday? And what is happening today?"

The quick answers to those questions are: not as busy as I thought, and still not sure yet.

Yesterday we had our final appointment with the previously-assigned Alta Bates oncologist, which became a very short meeting once we informed him we were going with Stanford for our treatment for this case.

More importantly, we were not able to schedule the needed CAT scans yesterday because insurance, despite supposedly being on the fast-track on this, still hasn't approved the Stanford angle. I've been assured by my HR department at Sega that once the insurance company approves everything, I'll get the same benefits for the Stanford treatment that I would have received had I stayed in-network.

Unfortunately, there was a bit of miscommunication yesterday that left the approvals still up in the air, and we hope to get that cleared up today -- but now I'm being told that the approving medical group doesn't consider my situation "urgent" and won't provide approval until Friday at the earliest.

I guess if by "urgent" they mean "probably won't die today," they have a point. Unless a random bit of falling asteroid hits me, or I fling myself off a 300-foot cliff, yeah, I probably won't die today. Of course, if by "urgent" you mean "there's a big-ass cancerous tumor growing in my stomach and with each passing day it becomes more difficult to attack it and remove it," well, I'd say they're a little off. But that's just semantics, isn't it?

This is to be expected; the insurance company never wants to go out-of-network to begin with, and when you bring Stanford into the equation, you're talking serious costs. Of course they're going to fight it, but we're having the Stanford doc call the insurance group's medical officer today in order to clarify that "urgent," in this case, means "get off your bean-counting ass and approve the treatment ASAP so we can save this guy's life right now." The accountants might not think it's urgent, but I'll tell you this: Kuato ain't getting any smaller, that's for sure.

So that's where we are on that. Several calls will be made on my behalf today to try and speed this up, and we'll just have to see where it goes. Once we get approval, Stanford should be able to handle everything else without much hassle, but getting the approval is proving to be a real pain in the ass -- but it's not like we didn't expect this.

I also have an appointment for tomorrow morning to, um... putting it vaguely here... ensure that I can still have a child in case any sort of cancer treatment leaves me sterile. So if Jessica Alba or Evangeline Lilly is out there somewhere reading this, just know that I'm already thinking about you fondly.

(Which is not to be confused with 'fondling.' Or maybe it is. You decide.)

Keep the positive thoughts and prayers flowing and we'll get some movement on this soon enough. I love all the emails and phone messages, and all the comments coming into the blog are great -- I read every one, and am amazed at people that I don't even know (like Francesca) that are writing from across the globe to lend their support. I still have no doubt we're all going to crush this thing -- me, you and everyone else that has kept such an amazing positive outlook on all this. There are going to be roadblocks like this insurance thing, but we'll get there.

Good things come to those who wait (but not too long)...

With much love,
Dino

The Weekend and Beyond

2008-05-26T19:09:00.000-07:00

It's the end of the long weekend and I've spent really the entire day switching off between reading, watching TV, surfing the net (for non-cancer-related stuff) and playing video games. Some might think that it's a waste of a day, but first off, the weather wasn't that great here, and secondly, I was frankly exhausted after yesterday.

Overall, the three-day weekend was just what I needed. Saturday morning I hung out with my friend Kim, and Saturday evening, in more of a last-minute thing, Matt, Danner and Carlos took me to the A's-Red Sox game. It was great to hang out with those guys; the only problem was that it was maybe the shortest game of the season, a 3-0 A's win that lasted all of two hours and 20 minutes. This would have been a great time to sit through one of those four-hour 10-8 American League specials that I seem to have attended so many times, but the evening went quickly -- too quickly for my tastes.

Still, I was really happy to see those guys and it's always fun getting part of the gang together. Matt asked if I was going to blog about it and Danner (rightfully?) accused him of just "wanting some ink" ("ink" being the newspaper term for publicity); Matt's had some ink on this blog already, but now he has some more, and I'm sure all those guys will get even more before this is all said and done.

In all seriousness, no one has asked for any ink since I started this blog and if there are personal interactions I have with you that you don't want made public here, let me know. I don't plan on publicly recounting every single detail about each of my social engagements or medical treatments -- some things are indeed sacred, and others are just obviously personal -- but feel free to give me a "hey, please don't share that with anyone else" if there are things you definitely want kept private.

I will then decide, on a case-by-case basis, on whether or not to actually keep it private, and what sort of nominal fee I will charge you if I do indeed determine that I will honor your request.

On Sunday, I had lunch with Barry, and then Chris, his girlfriend Virginia and her mom Lacy stopped by for a visit. After that, my mom and I went to Carlos's house for dinner, and then he and I caught Indy 4. Yep, long day, and not having slept well the previous night (see my last blog post for more on The Dream), I was completely exhausted by day's end. That's why today's veg session has been so welcome -- because of yesterday's mental and physical fatigue, and because tomorrow the ball will really get rolling quickly.

Tomorrow we're really going to step up the pace of this thing. I have a scheduled consultation with Dr. Cecchi in the afternoon but since Stanford appears to be driving this bus now, I am going to call in the morning and see if we still need to meet. I expect Stanford to call at some point tomorrow and schedule all the necessary tests -- probably for Wednesday, but the tests could even be run tomorrow -- to determine our next course of action (immediate surgery or radiation therapy). I need to mail some forms, and also speak to the Sega HR people to see if they can help with the upcoming battle with the insurance company. We also need to do some grocery shopping and Mom needs to hit Costco for some things. Big, big day, and the rest of the week isn't likely to be any lighter.

So yeah, the pieces have begun to move around the board and the preparations for battle are picking up speed. That's why I refuse to begrudge myself a day of lounging around doing nothing but relaxing -- and I'm sure there will be more of these sorts of 'do-nothing' days in the future during treatment, although there might be various side effects or levels of pain that would make 'relaxing' a rather inappropriate word for what I'll be doing.

Mom and I are going to duck out and grab a bite to eat before settling in for the night. How was Indy 4, you ask? Well, just know that I am a huge aficionado of the series. Raiders of the Lost Ark is probably my all-time favorite film, and I liked the other two as well, although I thought Temple of Doom was the worst, in large part because it was the least realistic. Of course, Indy World isn't particularly 'real' to begin with, but I tend to like my action films to have a sense of plausibility about them. When stunts occur that are beyond the realm of the ridiculous, that's when I tend to tune out.

That having been said, some of the action in Indy 4 was the least plausible of all the movies. Harrison looked fine, the script was okay (although a bit muddled in parts) and I had no qualms with the subject matter -- but there are just several things that happen in the movie that broke my suspension of disbelief and made me scoff "oh, c'mon." I never once felt that way during Raiders -- as crazy as it was in spots, it never made me feel like it was completely implausible.

But then, I knew it wouldn't capture the magic of Raiders, because likely nothing will in my mind ever again -- the magic will be different, anyway, when it happens with some other film. Treated purely as a piece of fun escapism, and as part of the overall series, Indy 4 was fine, but it definitely trails well behind Raiders and Last Crusade in the overall series, if you're asking me to rank them.

Which you didn't, but it's my blog, so I did it anyway. Next week, we'll rank the Police Academy films from best to worst, and talk about the perplexing career decline of Charo. Stay tuned.

With much love,
Dino

A Dream

2008-05-25T11:25:00.000-07:00

I hope everyone is having a great weekend -- or if you're checking this on Monday (or later), I hope you had a fantastic weekend. I'm having fun and I'll write more about that later, but I wanted to pass along a dream I had last night (actually, around 5 AM this morning, because I looked at the clock after I woke up from it).

Sleeping has become more of a dicey proposition as the tumor inside me shifts occasionally and it becomes more difficult to find a comfortable position in which to lie down. I would imagine that anyone who has ever been pregnant is pretty well familiar with what I'm talking about. A couple nights ago, I slept on the recliner downstairs, but last night, I spent most of the night in my own bed. Sleep was intermittent but I managed to grab stretches of 30 minutes here, 60 minutes there.

Meanwhile, I had a whole bunch of weird dreams all night, but I only vividly remember one of them, and as I've gone over it in my head this morning, I realized the symbolism is pretty unreal. I want to share it with you so the armchair psychologists out there can go wild, and you can maybe get a different perspective into my mindset. After I thought more about the dream, I realized that it's probably not incredibly difficult to interpret, but you can take from it what you will.

Here's how I remember my dream (and yes, this is a real dream, it's not an exercise in creative writing):

It was night, and I was swimming in a lake or a stream of some kind. I was with some of my oldest and dearest friends, including one friend that I've been in contact with much more in recent months than in the last few years. The water itself was quite murky, wasn't particularly pleasant, and there was a sense that we shouldn't be there -- that maybe we were doing something wrong.

Then some flashlights appeared in the distance, and the aforementioned old friend yelled "Get out of here now! Just go, go, run, run!" We all scattered and started running in different directions as the lights approached. I stumbled a bit, climbed over some rocks, and ultimately was captured by some authority figure while the rest of my friends got away.

I was taken to a temporary trailer-type of building, like one you'd see on a construction site. Inside, a big group of punk-type kids -- mostly teenagers, from what I can remember, but I do know that there was not any one individual that was overly imposing -- told me that I had been trespassing in their waters and I was in trouble. I asked what the specific charge was, and what exactly it was that I did wrong, but they did not tell me. They only taunted me, and I felt pretty helpless because there were so many of them there.

"I'm going to call my lawyer and sue you guys for holding me against my will," I threatened them, but they only laughed as if it was an idle threat, and told me that they'd heard it all before. The impression I got was that I was in their territory and because of this, they felt like they could keep me in captivity as long as they wanted without giving me any specific reason as to why.

My feeling of helplessness grew, and I started getting angrier and angrier about being held against my will. Meanwhile, although my captors never touched me or harmed me physically, they continued to somewhat taunt me and made sure to reinforce the fact that I was at their mercy.

And then I felt some sort of presence outside the trailer -- maybe a SWAT team, or a trained rescue squad -- and a couple of grenades blew open the trailer doors. There was chaos, everyone scattered, and I took the opportunity to run.

I ran away from the trailer, down some sort of path, and a few of the punks chased me. But now, I was away from their turf, there were far fewer of them, and when they caught up to me, it became apparent how much bigger I was than they were.

And at that point, I unleashed serious violence. I'm not a violent person by nature -- I've never been in a fistfight in my life -- and like I said, these punks had never physically touched me, much less harmed me. But my reaction to them was about one level short of insanity. I literally beat the crap out of all of them.

I vividly remember having one punk pinned on the ground, already clearly beaten, and still pounding his head over and over into the concrete. As for a couple other punks that were down and out of the fight, I still didn't leave good enough alone -- I kicked them around, spewing profanity, leaving them just short of death. It was like something out of a mob movie.

I don't think I killed any of them, but I remember leaving them so thoroughly physically beaten that there was no question of them ever messing with me again. And I remember feeling a bit scared and overwhelmed by my reaction to the whole thing -- so violent and so completely out of line with their transgressions against me. The punishment I meted out to them far exceeded what they did to me, but all I could think was "This is what happens when you screw with me." There was almost something cathartic to me absolutely physically abusing these people, but it was a bit unnerving at the same time.

And then I woke up.

At the time, I thought, "Well, that was a weird dream." When I finally dragged out of bed at 9 AM this morning after grabbing more snatches of sleep here and there, this was the only dream out of all of them that I remembered clearly. It wasn't until later in the morning, when I went back over it in my head, that the symbolism of everything in there crystallized in my mind, and I realized that it wasn't a weird dream at all.

Like I said, I don't think it's too hard to interpret, but maybe you have your own thoughts, and feel free to comment as you see fit. And now you know a little bit more about how my mind is operating in this entire situation.

There's a battle coming, and somewhere, those punk kids have no idea what happens when you screw with me.

With much love,
Dino

A Big Leap Forward

2008-05-23T18:43:00.000-07:00

It's the start of a long weekend, and I really wish I was out partying on this Friday night, but it's been an important and emotional day and I'll probably be out and about this weekend, so if I have to bite the bullet and make it a couch potato evening, so be it. I'm going to need the energy for the weeks ahead anyway.

This morning we met with the folks at Stanford, and it would be an understatement to say that it was a life-altering meeting.

As I mentioned previously, Lou managed to get me an appointment with Dr. Charlotte Jacobs, one of the foremost experts on sarcoma, which is a fairly rare form of cancer. Dr. Jacobs' schedule had been booked for the next three weeks, but after speaking with Lou, she graciously offered to see me this morning, just two days after Lou placed the call. So this morning I arrived at Stanford with my mom, my dad, and my step-mom Mimi to see what the Stanford folks had to say about the situation.

We first met with a medical student who performed the standard round of medical checks (the blood pressure, the temperature, slapping my ass to check for redness -- the usual stuff) and took a complete briefing from me on the history of my case. After thoroughly going over my current health situation and my medical history, he left to discuss the information with Dr. Jacobs, giving my parents, my 'bonus mom' and I some time to discuss my predicament amongst ourselves.

This is the first time we'd all been in the same room -- Mimi included -- since we got the big news last week, and there wasn't a lot of productive conversation that occurred on that day, in no small part because I was whacked out on 4 MG of Xanax after being informed that I had a very large cancerous tumor in my stomach.

It was an interesting convergence of parental power. Mimi has been down this road before, having lost a son (my step-brother Michael) to illness over 10 years ago, so this situation brings back a lot of emotion and feeling for her, but it also adds great power to her input. My dad, ever positive and philosophical, is focused on the step-by-step nature of this process, and how things need to run their natural course, making sure to provide needed perspective to my mindset when I get frustrated at my lack of control of this situation. As for my mom, well, she is the ultimate mother hen, now living with me, taking care of my every need, and being the indispensible protective shield that really only a mother can be. There's no way I'd be getting through all of this without her living here to just simply be my mom.

Each parent has their own role to play, and today, while waiting for Dr. Jacobs, we talked a lot about my positive outlook towards my battle, the incredible power of positive thinking, and the fact that a lot of people are far worse off than I am. I have a lot to be thankful for -- I've got an incredible support system, and a ton of cancer patients don't have that. I can't even begin to imagine what they're going through.

Then Dr. Jacobs entered, and the amazing support system got that much better.

She came in with Dr. Jeff Norton, a surgeon who checked out my stomach, asked me some questions, and then declared pretty plainly that we were going to need to surgically remove this bad boy in fairly short order. Before we can move forward, he said, we'll need the aforementioned high-def scan of my stomach so we can see quite clearly where the main problem areas are. This is pretty much the same thing Dr. Upadhyah told us yesterday, so it wasn't new news per se.

The real illumination came when Dr. Norton left and Dr. Jacobs got down to business. She patiently and clearly explained to us everything we needed to know about sarcoma -- it's a pretty uncommon form of cancer (it only strikes about 8,000 people a year), there are many variations of it, surgery is the typical form of treatment, many variations are responsive to either chemo or radiation or both, and that while there can be a genetic component, sometimes it just happens.

"Your diet did not cause this cancer, and your diet will have no effect on its spread or its treatment," she said at one point, and you could hear the sighs of relief from thousands of Taco Bell franchise operators across the country.

What quickly became evident was that this is Dr. Jacobs' area of expertise, no question about it. She had pretty definitive answers for all of our questions and reiterated the likely treatment protocols that our other doctors had mentioned: either surgery and then chemo/radiation (although according to Dr. Jacobs, radiation therapy is the preferred method for most sarcomas before and/or after surgery), or radiation first and then surgery. She wants to do the surgery first, and so do I, but we've got to make completely sure that it's the right thing to do, and we won't know that until next week.

She also told us a little about Dr. Norton, including the very small detail that he performs five to 10 large-tumor operations, including operations on sarcomas, per week.

To top things off, we discussed the very sensitive area of insurance and how to best get the insurance company to pay for this treatment. Dr. Jacobs graciously cut the cost of today's consultation (paid for out of our pockets, because it happened too quickly to be authorized by my insurance company -- if they'd even authorize it in the first place) to the bare minimum, meaning I got a refund of some of my pre-payment on my way out the door. Finally, she promised to work with my GP to get as many of the tests and scans, as well as the surgery itself, authorized by the insurance company if at all possible.

The bottom line here is that we couldn't have hoped for a warmer, more humane, more informative, more hopeful visit with a physician than we got today. Dr. Jacobs is just simply amazing; I can't put it any other way.

Let me be clear: this has nothing to do with Dr. Cecchi or Dr. Upadhyah, who are professional, competent doctors and excellent physicians in their own right. The visits we had with them made me feel like I am going to beat this disease, and their help and information was a major part of this process.

But as I left the examination room with my family after meeting with Dr. Jacobs today, I had tears in my eyes. I am carrying a very complex and rare disease in my body, and today I had an expert on the subject consult with me and join my fighting team. Next to her, I have a surgeon that is amazingly experienced in removing the type of cancer I have, and is an expert at removing these sarcomas. So it's not that my previous doctors aren't experts; they are, but just not in the area of sarcomas, which is of paramount importance in this situation. Having world-class physicians now on my side, getting ready to jump into battle with me, well, I can't describe what that means to me.

Dr. Jacobs, Dr. Norton and the Stanford Cancer Center are now part of my team. My mind-set was positive before, but the jolt of confidence this gives me is immeasurable.

Oh, and to top it off, Dr. Jacobs called me while we were having lunch after the consultation to tell me that my GP, Dr. Stewart, had agreed to authorize any and all treatment through the Stanford team. Now, the insurance company is still going to fight this tooth-and-nail because it's out-of-network, but with my GP on board, at least this will be an easier fight for us.

And, of course, the real fight, the only one that matters, is the one for my life. As we collectively exhaled outside the examination room following the consultation, my dad mentioned something to the extent that all the positive energy, prayer, thoughts and good vibes you've all been sending me for the last 10 days have converged to produce this moment. It's like a focused light shining down from above, showing us the way, he said, and with that I agree. Good things do happen when you focus on it, and that's what happened here.

Dr. Stewart called me as we were driving home to let me know that he was going to do whatever he could to help us in the insurance battle, but that we are going to have to probably raise a bit of hell ourselves to make sure they cover as much of these procedures as possible. That's fine; we can do that. That's really the easy part when compared to the battle ahead of me. As Dr. Jacobs said, there may be some twists and turns in this fight, and I have to be prepared to change course if and when it becomes necessary -- but that's been my mindset from the beginning. I'm not expecting a cakewalk, and never have been; this is some serious stuff I'm facing. I'm probably going to go through quite a bit of pain and misery before coming out on the other side. But I WILL come out on the other side, and that's all that matters.

Dr. Stewart left me with this: "Get out there and enjoy the weekend, enjoy the sun, and have a good time, because it's probably the last weekend you'll get to enjoy for a while." True enough. If the tests are completed expediently, I could either be in surgery or radiation (or even chemo) as early as next Thursday or Friday, although Dr. Jacobs thinks that if we do the surgery without any radiation prep, it will most likely be the week after next. Regardless, the next steps have been taken, the battle itself draws ever closer, and the down-and-dirty fighting will begin before I know it.

So yeah, I will definitely get out there this weekend and enjoy life, knowing that things are going to change pretty darn quickly once the holiday is over. Maybe tonight I'll give the new EURO 2008 soccer video game that Jaap so kindly sent me a good go, but mostly I'll be outside, soaking up the sun, spending time with friends, and enjoying everything life has to offer. I may even have a beer or two.

And, of course, I have to go see the new Indy flick. I saw Raiders of the Lost Ark in the theater six times; I know the movie by heart. I saw both Temple of Doom and Last Crusade on opening day. I would have snuck in a viewing of the new movie on opening day this time but, well, Thursday was a big day, and some things are more important than my favorite fictional archaeologist. But still, I'll make time to see Harrison don the familiar fedora; I've been waiting for this one for a long time.

Man, can I drone on or what? Time for me to go try out this new video game. Two quick, specific call-outs: to Lou, your intervention literally changed the course of my treatment, and you will never know the bounds of my thanks. And to Amy, my cancer sensei, the LIVESTRONG binder arrived today -- thanks for arranging that, and you continue to be an incredible inspiration to me. I will sweep the leg on this thing, oh yes I will.

To everyone else out there reading, know that I love you all -- and with that, have an amazing holiday weekend, keep the positive thoughts and love and prayers coming, and whatever you do, please make sure to take a moment to draw in a deep breath and just enjoy life. I'm not gonna get all preachy about taking advantage of every waking moment or anything like that, but if you can, take a sec to appreciate who you are and what you've been given. I know I have, and even given my current circumstances, I've know I've been pretty darned blessed in a ton of ways.

Happy Memorial Day weekend and I'll catch up with you soon.

With much love,
Dino

You Want Fries With That?

2008-05-22T18:34:00.000-07:00

This is a family blog, but cancer is an ugly subject, so if you're gonna follow along with me down this road, you have to be prepared for some pretty unsightly stuff. But that doesn't mean we can't have a little fun with things when the situation calls for it. So, that said ...

Remember yesterday when I said that Dr. Cecchi had ordered another ultrasound, although I had no idea why? Well, silly me -- turns out that it wasn't an ultrasound of the same area that has already been scanned, but rather a look at a more, uh, private spot below my belly.

Turns out that he wanted to make sure my "boys" were clean.

We got to the hospital this morning, I received my marching orders from a very nice receptionist, and checked over the course of action: I was there to get my testicles examined. We walked down to the ultrasound area and a very comely young lady took the printed orders from me, and before I knew it, I was ushered into a private room and told to disrobe from the waist down -- by this very same good-looking technician.

"I'll be back in a minute and we'll take a look," she told me before closing the curtain that separated the room from the hallway. Huh? What? We?

Well doesn't this just take the cake -- a cute woman wants to check out my li'l fellers, and it's for a medical reason. Naturally.

The pants and the skivvies came off and I laid down on my back with a blanket covering my lower half, and the technician came in and fired up the ultrasound machine. Soon she was checking out my li'l guy on the right side with the ultrasound machine, with me flat on my back, thinking that this was the ultimate of ironies. Jonas Salk doing an ultra on my nads? Not a problem. Nurse Ratched? There might have been a bit more pain involved, but okay, fine.

But this? This was just patently unfair.

She got through ultrasounding (is that a word?) the right testicle. "Looks fine," she said. "Nothing too exciting here." Oh, really? Speak for yourself.

She moved on to the left side, did some more of whatever it was that she was doing, and then put the blanket back over me. "Everything looks all right," she declared. "I'll show the pics to the doc, and you can clean yourself up, and we'll let you know if we need any more pictures." With that, she stepped past the curtain in the hall, not giving me the chance to ask if there were any other options on the menu that I could consider sampling before the consultation was over.

Okay, I know this whole thing might sound very demeaning to my very professional and competent technician, and that's not my intent. It's not her fault that she happens to be a good-looking lady that was required to check out my privates, just like it's not my fault that I happen to be a guy that has a weird preference for women checking out my privates because they want to, rather than scoping them out for evidence of cancer. That's just the way it works sometimes, and them's the breaks.

As Andy from Extras might want to know: Are you having a laugh? Is he having a laugh? Uh, yeah, I am, so although I know it might sound sexist, it's a joke.

The news on the, uh, "clearness" of my li'l fellers is both bad and good; bad, because it means that I don't have testicular cancer, which according to Dr. Cecchi would mean that we could "hit it out of the park" with the treatment -- it's just more common and more easily treatable than sarcoma, plain and simple. But the good is that my boys are clear, and I'm not gonna complain about that. The fewer the places that cancer shows up in my body, the better.

The second visit of the day with with a surgeon, Dr. Upadhyah. We had a good visit with him, and he outlined the potential treatment protocols we're looking at to beat this thing. I'll spare the specifics and just say we still need more information to make any firm decisions, including a much more accurate CT scan from a machine that can produce a 3D image of my stomach, so we can see much more precisely which organs are affected and which ones aren't.

Really though, what it basically comes down to is one of two likely options: either we'll have surgery to remove most of the tumor, and blast the remainder with chemotherapy, or we'll begin with chemo to shrink some of the tumor, and then have surgery to take out the rest. Both are key components of the treatment and it's now an issue of which will come first.

Of course, the Stanford expert, Dr. Jacobs, will have her own say tomorrow morning. She's an expert on sarcomas and may have an entirely different opinion, or may have a very strong preference to a particular course of treatment -- we'll see about that tomorrow. It's just another valuable piece of the puzzle as we head down the road towards treating this evil thing and getting rid of it -- it goes without saying that having an actual expert on the specific disease weigh in on the solution should be an immeasurable asset to us.

A couple things before I sign off. First, Tommy and Loretta's boy T.L. came through his procedure okay and should be out of intensive care tomorrow. That's good news. And I feel really good about what happened today in both medical appointments, despite the fact that some of you might think that first visit this morning might have left me feeling a little blue.

Finally, thanks for the various comments, suggestions on how to handle medical insurance, and the humor and support and love I get coming through various forms of communication. Family, friends, and people I've never even met are reaching out to me and that means everything -- you have no idea what a difference it makes on my mindset and my outlook. Please keep the positive vibes and love and prayers and info coming, and please know that my gratitude for that knows no bounds.

I hope everyone is gearing up for a long, fun, restful holiday weekend -- after the consultation tomorrow morning, I have no agenda for the next three days other than to enjoy life. That's the way it should be.

With much love,
Dino

On Tap

2008-05-21T19:37:00.000-07:00

"On what day did God create Spinal Tap, and couldn't he have rested on that day?"

Okay, sorry, I don't mean Spinal Tap. (Although I wish I did; I'd much rather be at Stonehenge at the moment.)

Today was a relaxing day, which is sort of a double-edged sword. It's easy to relax, watch TV, respond to emails and such, and make some phone calls while entirely foregoing that distinctly civilized convention that we usually refer to as a "shower." On the other hand, it's another day gone by with a very large and very dangerous mass in my belly.

There were some positives to be taken away from the day, however. First off, Matt's dad Lou has made some phone calls on my behalf and has arranged for me to consult with Dr. Charlotte Jacobs, a sarcoma expert at Stanford, on Friday. It's fantastic having Lou in my side in this fight because he is a radiologist, is well-connected, and knows how to get things done. In this case, he found a Stanford cancer expert that has a full schedule for the next three weeks, and she still offered to see me in two days for a consultation. Amazing.

Secondly, he asked for and received the biopsy pathology report from Dr. Cecchi and discussed some of the options with Dr. Jacobs, the Stanford physician. Lou told me some of what the report describes and while I really didn't want to know too much detail on exactly what was written (as I've mentioned, I'm more interested in keeping a positive focus on beating this thing, and not getting caught up into what it is or how tough it's going to be), he mentioned that at the most basic level, the report suggests that it's likely a liposarcoma of some kind.

Forget about what that means medically; I'll reiterate that I don't want to hear about how easy or hard it will be to beat it, or anything about survival rates, or the like. I know this is going to be a tough battle and don't need to be reminded of it. Instead, what it means for me is that some anecdotal stories that were passed along to me in the last week have taken on a little more meaning. Matt has a PT patient that had a liposarcoma the size of a football removed from his stomach, and he's doing fine. Andrew has spoken with a physician who said that people beat liposarcomas all the time. These anecdotes contribute to my mindset and help keep me going.

As I've written, my situation is different. My liver has been invaded, and other organs are at risk. Of course this is going to be a long, hard battle, and I'm ready for it. But just knowing that other people have beaten this, and that some have done so relatively easily, gives me a shot of confidence, regardless of how serious my own personal battle is shaping up to be.

So, what's on tap for tomorrow? A few things. Dr. Cecchi has ordered another ultrasound. He's out of the office for the next couple days so I'm not sure why, but I'll go in for that tomorrow morning. Tomorrow afternoon, I have a consultation with a surgeon where we'll likely talk about either a surgical biopsy or, more preferably, a surgical procedure that will simply remove a large bulk of the tumor and use that as the basis for a more definitive biopsy, and decide upon a further treatment protocol from there.

Apparently Lou and Dr. Jacobs discussed a similar concept today and I'm sure I'll talk with her about it on Friday. Like I wrote last time, I really like this concept: if it's medically realistic, then let's just cut out as much of the cancer as we can now, and move forward from there. We're going to need to go deeper to get a more definitive diagnosis anyway, so why not just take out a boatload of the crap while we're in there?

Seems logical enough. I'm sure there are quite a few medical reasons why we shouldn't do it like this, but I don't feel like we have a few weeks to sit around, enjoy a bottle of Corona, rub our toes through the sand and mull over all the options in a leisurely fashion. I want to kick-start this thing ASAP and although a lot of this is out of my hands and I've been told by several people that this is just how it goes when it comes to dealing with anything in the medical community, I just want to make it happen as soon as we can. This sounds like a solution that, if truly viable, can get things going rather quickly.

So, it's a big day tomorrow, with two appointments and also gathering the necessary information for the Friday meeting at Stanford. This brings me to my final part of the update -- the insurance aspect.

I have Blue Cross HMO, and although I'm not well-versed in how the referral and billing and payment process works, so far everything that I've had done has been in-network and therefore will be paid for. The Stanford consult could be an entirely different story -- and if Stanford looks like they are the best option for the full course of treatment, well, that raises a whole other set of questions of what insurance will cover and what it won't.

So, I throw out the call to anyone and everyone -- if there's anyone out there who has a pretty good idea of what I can expect in terms of getting insurance to cover any of the Stanford aspect, or if there are any health insurance experts out there that have advice on how to handle this, please drop me a line. I won't spend a lot of time on this blog lamenting our screwed-up health care system or the fact that people facing life-threatening illnesses have to even spend time worrying about how to pay for treatment (and I'm one of the lucky ones that has coverage in the first place); I'll just ask and see if anyone has any expertise, advice or suggestions on how to navigate an extremely complicated system should we ultimately choose to have Stanford handle the bulk of treatment.

That's about it from me for today. As always, thank you from the bottom of my heart for all the love, support and positive prayer and energy. We're gonna beat this thing. Sometimes the steps seem like they're coming slowly or not at all, but they're there; it's all a process and it all has to play out in its own time. Thanks to some outside help, my process has been sped up a bit today, and I'm very thankful for that. With luck, before long I can get to the business of the real hard work, which I'm anxious to begin.

Oh, one last thing -- please save some positive thoughts and prayers for Tommy and Loretta's boy T.L., who goes in for a very serious medical procedure tomorrow. While I'm in no hurry to speed ahead to my twilight years, I am in fact looking forward to watching T.L. throw his slow-moving left-handed junk at major league hitters in a 20-year career that makes him enough money to bring his parents (and some of his parents' select friends) on a few Caribbean cruises.

With much love,
Dino

The "Results"

2008-05-20T14:35:00.000-07:00

(Quotes in the title used intentionally.)

Drumroll please... and, the biopsy shows...

...wait for it...

Nothing. The biopsy results are inconclusive. After the last five days of waiting, now I have more waiting ahead of me.

To say that I'm frustrated is an understatement. I went down to the clinic at 9 this morning with Mom and Andrew, and truth be told, I was feeling pretty good. Mom and I had a long talk last night about how I really wasn't too concerned with the details -- just tell me what I have but really, let me know how I'm going to kick ass all over it to the tune of Tyson-Spinks back in '88. Don't give me any of the negative "You can't do this" crap, just tell me what I have to do, and I'll do it.

So here we are, a day later, with very few details more than we had last week. But there is some new info, so I will lay it out for you.

First off, there's no sugar-coating this baby in my stomach. It's huge. It's not an "oh my lord, it's the size of a golf ball" type of thing -- no, it's magnitudes bigger. It's in my stomach and waist and knocking around my intestines and most importantly, as Dr. Cecchi (the oncologist) drove home again and again, it's invaded my liver. And that's the big deal here.

We knew it had moved into the liver, but Dr. Cecchi's analysis is that its presence in there is a major complicating factor. We still don't know what kind of cancer it is yet -- the very likely culprits are still some sort of malignant sarcoma, but we're not sure -- but its invasion into the liver means that if it's a sarcoma, it's not going away, ever. It's in my liver for good, and that means that whatever the outcome here, I won't ever truly be 'cured' of cancer (until medical technology catches up enough to find a cure for this).

This is not a good thing, but it's not the end of the world. More on this in a moment.

The other complicating factor, according to the good Doc, is that if it's a sarcoma, it could have spread by blood to other parts of my body. To this end, he's ordering an MRI and PET scan to check out my brain and some other organs. I haven't had any brain issues that I know of (other than to blurt out some of the real jackass things that pop into my mind from time to time, and embarrass myself completely) and I feel great, but who knows what the scans will show. We'll just have to wait and see on that one.

So now you're probably thinking, "So, uh, where's the good news in all this?" Well, there is good news in its own way. First off, as blunt as he was (and that's his job), Dr. Cecchi made it clear that there are solutions here. First off, he wants to surgically cut out as much of the mass as he can. I'm really digging this concept -- would love to just get this crap out of my body immediately and then get down to the nitty-gritty of treating the remaining tumors with radio and chemo. Let's carve most of this away and pound on the rest until I'm in remission -- that's a scenario I like.

Not only that, but he didn't beat around the bush when Andrew asked him one-on-one what the timetables were for me on this one. Andrew did a similar thing with my GP last week -- asked him straight up if I was going to start having to count my remaining time in months or weeks -- and got the same answer from Doc Cecchi as he did last week: no, it's not about that. It's about exploring all our options, getting rid of this invader, and surviving. There are no other acceptable alternatives and neither doctor has proferred anything resembling a prognosis with the word 'terminal' attached to it.

The last bit of good news? Well, it's a stretch, but who knows -- the biopsy isn't confirmed, and maybe, just maybe, it's a much more treatable form of cancer that will leave me cured when all is said and done.

And, the capper -- we'll still be discussing this with the folks at Stanford, and they may (or may not) have some other solutions to offer. We'll see.

As for the Big Picture, well, it goes without saying this will be tough -- the hardest thing I ever have or ever will face. And if I have to spend the rest of my life with the proverbial Sword of Damocles over my head, living in remission and going in to check up every 3-6 months to see if I'm still healthy -- so be it. As I said above, living with cancer in remission is better than the alternative, so it's not the end of the world. And believe me that I'll be fighting to get to that point, through hell and high water.

I've received so many phone calls, emails and texts today asking about the results. If I haven't gotten back to you, don't worry and don't ever take it personally. Just know that I got your message, it means the world to me, and every bit of support boosts me up in this fight. I will end up speaking to you sooner rather than later, when things cool down a bit.

By the way -- a new drug hit my personal arsenal today, some Vicodin, to help with the stomach pain. The stomach has felt pretty good up until last night, but the tumor must have shifted because I couldn't sleep on my back too well. Between that and the Xanax, to quote a sorta-famous song from the Sixties, I've been Feelin' Groovy today.

I have a consultation with the surgeon on Thursday so I will let you know more then. Keep those emails and messages coming -- they are my life blood.

With much love,
Dino

Tomorrow

2008-05-19T17:41:00.000-07:00

Hey all,

Here's what's coming up tomorrow.

I have a 9:00 AM appointment with an oncologist in Oakland to discuss the biopsy results. If you've ready my previous entries, you know that I'm fully ready for a pretty severe diagnosis and a long battle ahead of me. God willing, it will be easier than that, but I have a pretty big growth inside my stomach and I'm just being realistic. We're in for a battle.

Mom and Andrew are going to come with me and ask most of the questions. To me, it will be a lot of technical terms and noise. But frankly, I'm not as concerned with exactly what I have (of course, I am concerned, don't get me wrong, but hear me out) as with what we're going to do about it.

I don't want negativity. I don't want survival rates. I don't want to hear what I can't do. I only want to hear what I can and will do to beat what's inside of me and get rid of it forever.

So as you travel in spirit with me tomorrow morning, please keep in mind this is still an early part of the journey. Depending on what I have, and assuming it's as serious as initially thought, we're going to get Stanford and/or UCSF involved, and they may have a completely different perspective on how to approach it. No offense or disrespect intended to my GP or tomorrow's oncologist whatsoever -- they are fine physicians in their own right, and their course of action could be the most appropriate. But, for instance, if I have a rare form of sarcoma, then I need to talk to an actual sarcoma expert at Stanford to get the best possible treatment protocol. So, like I said, tomorrow we start gathering information, but by no means is tomorrow the last word on what is going to happen.

I know a lot of you are anxious to hear the results and prognosis. I will try to get something up on the blog tomorrow with the details, but there are a few caveats here, and please keep them in mind when word is passed around (either on the blog or by phone) with what the current information is:

* Like I said, the outlook tomorrow is the first opinion, and could change. A second opinion from the big dogs at Stanford or UCSF is almost a guarantee. Their opinion might be exactly the same, but at least we'll have some consensus.
* Depending on how the day goes, I may not even be able to get to the blog tomorrow, and in that case, we'll have to phone tree everything out there. Andrew will be with me, he'll be able to call Matt and Bernard, they'll be able to get the info out to others, etc.
* MOST IMPORTANTLY: Please do not scurry to the internet, Google the exact terminology of what I have, and make a decision then and there about how difficult or easy you think this treatment is going to be. Each and every one of you has been so amazing to this point with your love, prayers and support, and now the last thing I need is someone calling or writing and saying "Oh, I'm so sorry" because they've read on Wikipedia that my form of cancer has a very low survival rate or something. Not that I expect this to happen, but I'm making sure to note it here so that it doesn't.

I am me, with my own brain, body, emotions, resolve, health, outlook, opinions, and everything else. I am not anyone else. The survival rates include everyone, old and young, healthy and infirm, positive attitudes and negative bring-me-downs -- it's a composite. I'm not a composite, I'm me, this is my cancer, and I'm determined to kick absolute ass on whatever I have. There may be some curve balls along the way, but if so, I'll pull a Pedro Serrano and figure out how to hit the bender just when I need it most.

If you're reading this blog it means you care about me, and by definition it means that I care about you too. We're moving along in this process -- first the H-bomb drop that I have a massive tumor in my stomach, then the biopsy, now the results. There's still a long way to go and you and I are still going to talk many times before this is over and behind me. So, just know that I'm feeling all the love and support, I always have been, and I take everyone's positive energy and prayers into that room with me tomorrow as we learn more about the battle ahead.

And when I do put the word out as to what this cancerous culprit is, remember that it's still only the beginning, and in my mind, I really don't care too much what it is, I only care about getting rid of it. Tuesday, May 20 is a big step in the journey, but it's only one step.

I'm riding a bit of the Xanax wave right now so I'm gonna pull a "Seacrest out" and hit the couch for a while. As always, I am overwhelmed by your outpouring of support and I truly believe that when I beat this thing, each of you will have had a significant part to play -- so keep sending me the positive energy, thoughts and prayers, and with that power behind us, anything is possible. Talk to you soon.

With much love,
Dino

Little Victories, Little Demons

2008-05-18T08:46:00.001-07:00

I played almost the full Mirror Image show yesterday standing up. It was originally my intention to sit for the show so as to protect my stomach pain, but my stomach felt fine, so with the exception of one slow ballad where I took a break because my back was hurting, I stood and 'rocked out' the whole time (at least as much as I could).

Little victories.

It was a beautiful day, really hot, but thankfully we had a tent covering the stage. For not having rehearsed in a month, and with my mind perhaps a bit elsewhere, and with with our singer Lisa just five days off major shoulder surgery and wearing a massive sling, we did okay. We even had one solid jam at the end of a song where our drummer Billy and I really seemed to be locked in and almost telepathically varying the rhythm behind Brad's violin solos. It was very gratifying to hit a groove like that.

Sadly, I fear that will be my last Mirror Image show for quite a while -- I mean, based on Lisa's and my condition, we should rename the band 'The 4077th' or something, but we're stuck with Mirror Image, like it or not. But while Lisa will heal relatively quickly, I'm in for a bigger battle. But I will be on stage with those guys again, I know it.

This resolve is, I'm sorry to say, not unwavering. I have received countless messages of support from all of you lauding my incredible outlook, and I continue to have faith and confidence in what's ahead for me, because let's face it: as Ghostbuster Peter Venkman told the scared administrator in the haunted library, "We don't even know what you have yet." This is true. Tuesday's the big day and until then, it's mostly worthless speculation.

But that doesn't mean there aren't demons. And yesterday was my first day. I couldn't tell you why. Maybe it was because I was alone for a while after the gig. Maybe it was because my band members noted that my face is thinner (I have lost a bit of weight, yes). Maybe it was because I stupidly looked on the internet at some stuff regarding the type of cancer that the doc is guessing (key word there, guessing) it might be.

I dunno what it was, frankly. But the reality was that the demons crept in. The negative thoughts swirled. The confidence wavered. The last few days prior to that I have felt like a gunslinger, glint in his eye, ready to take on all comers, ready to get hooked up to whatever machines or IVs necessary, and to spend days in agony, going through untold pain, to get this unwelcome bastard invader out of my body.

I'm still ready for that, but yesterday I allowed the negative to creep in. And I realize that it's silly, and worthless -- but I also realize that I'm human, and it will happen. Nobody can stay as positively resolute as I have been. There's a limit to exactly how brave a face you can put on, how much you can stride around like you're in full control. The fact is, I'm not in full control here -- there's a lot out of my hands and the most I can do is respond with every possible bit of my energy and positive outlook once I'm given my roadmap. But even the best prizefighters get knocked down, and that's what happened yesterday for a while.

Chris showed up later in the evening, we went to dinner and had a great talk, and I mellowed out a bit. Got a decent night's sleep with the help of some Xanax and this morning I'm expecting Marj, Jeff, Barry, Hugh and maybe a few others to come over for brunch, and this afternoon I hope to kick it with Andrew and Blair and their families in the afternoon sun at Blair's great house on a hill in Oakland. The weather has been phenomenal and it will be a great way to close out the weekend.

The support and emails continue to flow and I feel the energy from all of it -- literally, all of it, believe me. It means more to me than anyone will ever know. Please keep it coming. We're all on this road together -- I'm the main player in this particular show, but each and every one of you has a part to play and it's an extremely meaningful part. There are no bit roles here, there are no walk-ons, there are no two-second Hitchcock cameos. You might take on those 'extras' roles in other people's stage plays, but not mine -- I need you here with me, in mind and in spirit, as I step into a whole new world of discovery and come out the other side. Each piece of support you give to me, whether it's by a call or email, or even a positive thought or prayer, is a little victory and it helps drive away those nagging little demons.

I'm off to get ready for the day. As always, I love you all and will continue to keep you posted as we approach the time for complete diagnosis and treatment. Have a great Sunday.

Dino

The First Step

2008-05-16T14:21:00.000-07:00

Where to begin? Where does one begin with something like this?

Well, there’s a beginning, and we’ll get to that at a later time – it’s pretty uninteresting, really, so you’re not missing much – but let’s just jump right in and talk about where we are now, today.

So – here’s the deal. I have a pretty large mass of something in my stomach. It starts near my waist, comes up my side, and curves over into the middle of my upper stomach just below my chest cavity. Right now both my waist and my upper stomach are a little distended; I’ve never been a thin guy (well, back in high school I was in good shape, but that went out the window once I discovered beer and dorm food), but the size of my stomach and gut are currently not in line with my weight. Not that if they cut all this crap out of my body I’d be left with a tight-ass six-pack or anything, but I certainly wouldn’t look as if I was carrying Kuato from Total Recall around in my belly.

On Tuesday I had an ultrasound and CT scan, got the news about what was going on, and they scheduled a biopsy for Thursday. Like I said, I’ll touch on that stuff later. It’s a day that I don’t want to think about at the moment – the most terrifying thing I’ve ever faced, to say the least – but it’s part of the story and as your faithful narrator, we’ll touch all the bases before this is over.

Anyway – the biopsy. Got to the hospital at 8 AM, checked in, took off all my clothes and put on a hospital gown, signed some forms, and got a nice IV needle stuck into my wrist. The prep time was lengthy as we waited for a room to be ready, but my mom, dad and stepbrother Chris were with me and the time passed quickly.

Then I went into the room and was set on a CT scanning table. The team was extremely professional and the guy in charge of my medication – I think his name is Tim, but I don’t quite remember now because one of the drugs they gave me causes you to forget this sort of thing – was really cool. Unfortunately he didn’t comply with my request for him to slip some liquid Ecstasy in the IV drip, but he did close to the next-best thing, dropping me into near unconsciousness and keeping me mentally afloat just enough to comply with the doctor’s request for me to hold my breath for a couple CT scans and then do the same for each of the needle insertions.

I don’t really remember them giving me the local anesthesia for the biopsy needle, but whatever they did, it worked to perfection. They stuck me with the needle over 12 times – I didn’t feel the need to count specifically – and finally got an appropriate amount of tissue. I was asked to breathe in and hold my breath for each insertion but I never once felt a thing. Overall, I don’t remember much about the procedure, but the doc did tell me what they were doing:

“We’re getting as much of this material as possible so we can get the best possible diagnosis. I’d tear the whole thing out of you if I could, but there’s blood and organs and such, so it’s a bit more complicated than that,” he said.

“But we will get the whole thing, doc?” I asked hopefully.

“Oh yeah, we’ll get the whole thing,” he said confidently.

Now, I’m well aware that this means nothing in and of itself; it’s not like the doctor is going to hem and haw and tell me that I’m in bad shape while I’m half-asleep on the biopsy table. But even if it’s just idle talk, it’s little victories like this, positive moments and attitudes, that add up and contribute to my positive spirit.

Soon the procedure was over. They rolled me back into the prep room and kept me for three hours just to make sure everything was okay, which it was. Lots of idle chat with the nurses and my folks and Chris. I even dozed for a while. Also made sure to make the requisite amount of sarcastic remarks just for my own self-amusement. This is what I consider to be my “jackass” mode, although my mom prefers to term it as being “charming” to the hospital staff -- but whatever it was, all that mattered to me was keeping myself and those around me in high spirits.

At 3, they let me go. The new nurse on shift took out my wrist IV and gave me the list of instructions – relax for a day or two, no physical exertion, no driving for 24 hours, no heavy lifting, etc.

“So can I play the full 90 minutes in my soccer game tonight or do I have to come out at halftime?” I asked, deadpan. He got it. Like I said, so long as I’m amusing myself, then I’m happy.

So – that was the first step in what is shaping up to be a long journey. Now it’s waiting until Tuesday for the results. I have steeled myself for the worst: the initial assessment by the radiologist and my GP is that my stomach mass is consistent with a type of sarcoma, very likely malignant, and that it can be attacked with chemo and radiation. I have already accepted this as reality and I am not on edge waiting for a better diagnosis. Things could be better, sure (or worse, but let’s not go there at this time), but I am already mentally geared towards fighting this thing, beating the crap out of it, and getting on my with my normal life on the other side of what will be an amazingly difficult and yet tremendously edifying journey.

I’ll try to continue to document this experience as we move forward. If you’re reading, you know I’m a writer, you know I’m verbose, and you know I like being the center of attention. So, this is a perfect way to combine all three and give you a glimpse into what is going to be my world for the next many months (and really, as a cancer survivor, for the rest of my life, not that I’ll need to blog about all that once this part is over!)

Is there a chance that the results come back and show a benign mass, and this is much ado about nothing? Sure, there’s a chance, a pretty slim one, but if that’s the case, I’ll make sure to let everyone know ASAP, and we’ll hopefully get it taken care of pretty easily.

If not, then we probably have a bit of a ride ahead of us – and when I say “we,” I mean all of us. The outpouring of love and support I have received in the last three days has been humbling, amazing, and phenomenal, and I will never, ever have the words to explain the strength and power that each and every one of you have given me with your prayers, thoughts and positive spirit. I have the best family and friend support group anyone could ever ask for, and you need to know that every phone call, email, Facebook message, letter, or message helps in an immeasurable way. I am so blessed to have you thinking about me, praying for me, and sending your positive energy my way, and for that, I thank each and every one of you and I love you all.

If you call or write and I don’t respond quickly, please don’t be offended. I have a lot on my plate and a lot of people to speak to, and please believe that I am hearing every phone message and reading every email, and will eventually get in touch with you.

Okay, long post here so I’ll wrap it up (somewhere, my boss Nick in the UK is thinking "c’mon mate, you need to use sentences instead of paragraphs here!" and he’s right). Here’s what you need to know about me at the moment:

* I have a pain in my stomach from the mass that’s in there. Aside from that, I could play an hour of basketball, or run a couple miles, or go on a hike, or whatever. I feel healthy and that’s a good thing.
* As of Wednesday, my blood work was good – no issues with the liver, kidney, pancreas, or anything. My body is functioning properly. That’s a good thing.
* Finally and most importantly, I am a fighter and a stubborn SOB, and I am going to meet this head-on, and I am going to beat it. That’s it. That’s all. I'll need all my strength and yours, but together we will kick this thing.

Thanks for reading. I’ll continue to update on random occasion, and feel free to keep posting to the Facebook page if there are things you want to know about. I’m also playing with my band Mirror Image tomorrow in Santa Clara – I want to keep my life going as normally as possible, both now, and during treatment too.

My love to all of you and talk to you soon.

Dino